ERN ReCONNET

Welcome

Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website.

An information hub with a patient-centered approach

Welcome to ERN

ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune diseases such as systemic sclerosis, mixed connective tissue diseases, inflammatory idiopathic myopathies, undifferentiated connective tissue diseases, and anti-phospholipid syndrome. ERN ReCONNET aims to improve early diagnosis, patient management, care delivery and virtual discussion of clinical cases within the network and with affiliated centres.

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ERN RECONNET – NEWSLETTER N. 27: DECEMBER EDITION

The new ERN ReCONNET Newsletter n. 27 – DECEMBER EDITION – is out! Here is a list of our last news for this amazing new edition: Season’s Greetings from the Network Coordinator of ERN ReCONNET 2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases is coming up! CPMS 2.0 Launch and Training Opportunity! Meet our new […]
ERN RECONNET – NEWSLETTER N. 26: SEPTEMBER EDITION

The new ERN ReCONNET Newsletter n. 26 – SEPTEMBER EDITION – is out! Here is a list of our last news for this amazing new edition: 2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases New ERN ReCONNET Disease Coordinators ERN ReCONNET at the ACR 2024 ERN ReCONNET Exchange Program – Update ERN ReCONNET Webinars (Season […]
Newborn Screening (NBS) Awareness Month

In the US, during 1950s-1960s Dr. Robert Guthrie developed a paper blood spot card test as a new assay to screen newborns for phenylketonuria, PKU: The Newborn Screening (NBS) test was born. His pioneer work defined the beginning of the NBS programs that led to early diagnosis of children with genetic conditions (like PKU, a […]
ERN ReCONNET Infographic on Videocapillaroscopy

The ERN ReCONNET Education and Training Working Group (WG) is glad to release its new flyer on nailfold videocapillaroscopy (NVC), a new and informative document targeting patients and lay audience aimed at explaining such an important diagnostic approach. The document was developed by the Network under the leadership of Prof. Maurizio Cutolo from IRCSS – […]
ERN ReCONNET at the ACR 2024

ERN ReCONNET is very honored to be at the ACR Convergence 2024 that will take place November 14 – 19 at the Walter E. Washington Convention Center in Washington, D.C.! The ERN ReCONNET Coordination Team will be at Booth number 2101. Stop by to say hi, to chat with us, and to meet with other […]
New ePAGs Advocates joined the ERN ReCONNET

ERN ReCONNET is a growing Network and we are pleased to announce our new ePAG advocates that recently have joined us following the addition of Jose Ballarin in June. Those women will further strengthen our actions and impact across Europe on behalf of rare patients. Thank you and welcome on board! The Network welcomes Olga […]
ERN ReCONNET New Disease Coordinators

The ERN ReCONNET has elected its new Disease Coordinators that will lead the activities and actions of the Ehlers-Danlos syndromes (EDS) and the Sjögren’s Syndrome* (SS) disease groups. The elections saw a huge participation among the Network members and as ERN ReCONNET we congratulate with Dr. Marco Castori from the Fondazione IRCCS-Casa Sollievo della Sofferenza, San […]
EURORDIS: Black Pearl Awards 2025 Nominations

Don’t miss your chance to nominate your star of the rare disease community, or enter yourself, for the 2025 EURORDIS Black Pearl Awards! These award categories recognise the outstanding efforts of individuals, organisations, companies, researchers, scientists, media, and policy makers in bringing about change to improve the lives of the 30 million people in Europe […]
ERICA ERN Research Conference

The ERICA 4th General Assembly & ERN Research Conference, hosted by MetabERN, will take place from December 11th to December 13th, 2024 in Udine (Italy). The aim of the ERICA consortium, in which all 24 ERNs take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. ERICA […]
Rare DiseRare Diseases International (RDI) Public Webinar: Towards a World Health Assembly Resolution on Rare Diseases 2025

The public webinar “Towards a World Health Assembly Resolution on Rare Diseases 2025”, that will take place on Aug. 30th 2024, 14:00 and 15:30 CEST. This webinar, co-hosted by Rare Diseases International (RDI), the Arab Republic of Egypt, the State of Qatar, and Spain will be an opportunity to explain in more detail the opportunities […]
ERN ReCONNET Endorsed Event: 1st Myositis Summer School of the Myositis Network Germany

On August 9 and 10, 2024, the first Myositis Summer School of the Myositis Network Germany, endorsed by the ERN ReCONNET, took place at the Kerckhoff Campus of the JLU Gießen in Bad Nauheim. This summer school was made possible by the generous support of the Gabriele and Peter Nitschke Foundation. It offered intensive theoretical […]
Enpr-EMA: Cross-Border Access to Paediatric Clinical Trials Survey

The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) created by the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) is collecting data. The aim of this WG is to facilitate the inclusion of children and young people in clinical trials across Europe avoiding any language barriers. Recently, this WG has identified that […]
Newborn Screening – Real World Applications and Technologies

IRDiRC‘s Special Edition on “Newborn Screening – Real World Applications and Technologies” is now out. Guest editors are Dr. David A. Pearce chair of IRDiRC and Dr. Virginie Bros-Facer member of the Diagnostic Scientific Committee at IRDiRC. Newborn screening (NBS) programs are an integral part of public health systems aiming to identify infants born with […]
AI Act

The EU Commission developed its AI Act, the first-ever legal framework on AI, which addresses the risks of AI and positions Europe to play a leading role globally. The AI Act provides AI developers and deployers with clear requirements and obligations regarding specific uses of AI. At the same time, the regulation seeks to reduce […]
EURORDIS 6th Mental Health & Wellbeing Webinar: ‘How to deliver a diagnosis’

The 6th Mental Health & Wellbeing Webinar: ‘How to deliver a diagnosis’ webinar organized by EURORDIS is scheduled for Oct. 23rd 2024 – from 2.00 pm to 3.30 pm CET. The ERN ReCONNET will be actively involved as our Scientific Coordinator, Dr. Talarico, will be one of the invited speakers. Registration is free and open. […]
New Jardin website is now online!

JARDIN is a Joint Action (JA) created to achieve the integration of the ERNs into National Healthcare Systems (NHS). The EU has funded this pioneering 3-year project involving all Member States (MS) plus Norway and Ukraine with the specific aim of reducing the diagnostic odyssey through the improvement the ERNs accessibility for patients across Europe. […]
Take the new Rare Barometer survey on the impact of rare diseases on everyday life: Make your voice heard!

The new EURORDIS Rare Barometer survey on the impact of rare diseases on everyday life is now live! By asking questions on your participation in daily activities, such as school, leisure, and work, and on what you would need to live life at its fullest, EURORDIS will be able to advocate for people with a […]
EJP RD – Data Resources and Tools Knowledge Awareness

EJP RD is still gathering responses for its survey on the impact of Rare Diseases research resources and tools provided by the Network. As a valued member of the Rare Diseases research community, your feedback is crucial. This survey will help them understand and address the gaps in rare diseases research, guiding our future efforts […]
EJP RD Online Course “Innovative Therapies and Personalized Medicine for Rare Diseases”

Exciting News! The new European Joint Programme of Rare Diseases (EJP RD) course “Innovative Therapies and Personalized Medicine for Rare Diseases” is officially live. Explore cutting-edge advancements in gene therapy, regenerative medicine, and beyond. Be a part of the revolution in rare disease treatment! In this five-week course of the EJP RD, you will have […]
ERN ReCONNET joins the World Scleroderma Day 2024

For the second consecutive year, ERN ReCONNET is happy to join the World Scleroderma Day on June 29th. Follow us on our social media (LinkedIn X YouTube Instagram @Threads Facebook) to celebrate together the World Scleroderma Day! Systemic sclerosis (SSc) is an orphan disease systemic connective tissue disease characterised by autoimmunity, fibrosis of the skin, and internal organs and vasculopathy. Unfortunately […]
AN IMPORTANT ARTICLE FROM OUR EPAG, JEANATTE ANDERSEN!

Recently, our ERN ReCONNET ePAG representative for Systemic Lupus Erythematous (SLE), Jeanette Andersen, has co-authored an important article on children born to mothers with autoimmune rheumatic diseases published in a special edition on pregnancy of The Lancet Rheumatology, the world-leading public health journal. This scientific article shed a light on how maternal autoimmune rheumatic diseases can influence the […]
EURORDIS Webinar: Rare Barometer survey on the impact of rare diseases on everyday life

On Wednesday 10 July at 2.30 pm CEST, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life. The survey will be open to all people living with any rare disease and their family members worldwide and will be available […]
The paediatric Patient Expert Group (PEG)

Are you an adolescent aged from 12 to 18 living with arthritis (including rare juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis, systemic juvenile idiopathic arthritis, giant cell arteritis) or multiple sclerosis? Are you interested in getting the skills to actively participate in scientific research to contribute to developing and shape the themes of health, rare […]
New articles from our ePAG, Dr. Silvia Aguilera!

Recently, our ERN ReCONNET ePAG representative for Antiphospholipid Syndrome (APS), Dr. Silvia Aguilera, has published a very interesting article in a special edition on pregnancy of The Lancet Rheumatology, the world-leading public health journal, on the challenges of designing and conducting cohort studies and clinical trials in pregnant populations. In particular, the “Challenges of designing and […]
MEETING della partnership italiana della Joint Action JARDIN

ERN ReCONNET è felice di poter condividere con tutti voi, la sua partecipazione all’evento organizzato per oggi dal Ministero della Salute a Roma, focalizzato sul progetto Jardin (JA) – Joint Action atto ad integrare gli ERNs sui Sistemi Sanitari Nazionali. Questo è il secondo evento che si svolge in Italia sul tema, il primo si […]
ERICA GA & ERN Research Conference

The ERICA 4th General Assembly & ERN Research Conference will take place from December 11th to December 13th, 2024 in Udine, Italy and it will be hosted by MetabERN. The aim of the ERICA consortium, in which all 24 ERNs take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and […]
EJP RD: End-user Training for the EJP RD Virtual Platform

The EJP RD end-user Training Webinar is scheduled on June 26th, 2024 from 10:00-12:00 CEST. This free online training is intended for potential users of the EJP RD Virtual Platform (VP) that is developed in the context of its Pillar 2 activities, the participants will be equipped with the necessary skills to effectively utilize the […]
EUCOPE webinar: Making Cross-Border Healthcare for ATMPs in Rare Diseases a Reality

Accessing healthcare across national borders has been a long-standing issue for people with rare diseases. The primary reason for this is that these patients live across Europe, but – due to the rarity of these diseases – the clinical expertise tends to be concentrated in certain countries only. This issue of cross-border healthcare is challenging […]
New publications: Introducing the DUC Framework and Common Use Condition Elements

EJP RD proudly announces two ground-breaking publications that help pave the way for the future of research data sharing and information governance 1) Getting your DUCs in a row – standardising the representation of Digital Use Conditionshttps://www.nature.com/articles/s41597-024-03280-6 This publication reports a robust, standard data structure that addresses the complex challenge of responsibly sharing research data, […]
HaDEA & the ERNs

The European Health and Digital Executive Agency (HaDEA) has signed 24 multi-annual grant agreements with the ERNs for a total contribution of over €77 million for the period October 2023 – September 2027. The ERNs are virtual networks comprising 1619 highly specialised centres in 27 EU countries and Norway. Their work is crucial in facilitating […]
ERN ReCONNET at EULAR 2024

The EULAR 2024 Congress will be held onsite, in Vienna, Austria. The EULAR 2024 Congress will offer a cutting-edge congress experience that will only be enhanced by the outstanding celebrations of the EULAR Communities. Since its introduction in 2000, the EULAR European Congress of Rheumatology has become the primary platform for exchange of scientific and clinical […]
WHO. World Health Assembly endorses resolution on social participation

At the Seventy-seventh World Health Assembly, Member States endorsed a resolution (PDF doc to be downloaded WHO Resolution – Public Health Engagement) to implement, strengthen and sustain regular and meaningful social participation in decision-making processes for health. Social participation, as defined by WHO, means empowering people, communities and civil society through inclusive participation in decision-making processes that […]
New EU rules to ensure safety of medical devices

The EU revised the laws governing medical devices and in vitro diagnostics to align with the developments of the sector over the last 20 years. The priority was to ensure a robust, transparent and sustainable regulatory framework and maintain a high level of safety, while supporting innovation. Two new regulations on medical devices and in […]
EU Commission. European Health Union: stronger and better prepared for the future

The Commission adopted a Communication on the European Health Union (PDF doc to be downloaded: EU Commission – EU Health Policy Comm 2024), which highlights the strides made in EU health policy over the last four years, for the benefit of citizens in the EU and worldwide. The start of this mandate was marked by the […]
Public consultation: conflict-of-interest rules under the EU Health Technology Assessment Regulation

The European Commission launched an online public consultation on the draft implementing act on the management of conflicts of interest in Health Technology Assessments (HTA). This online consultation will be open for responses until 26 June 2024. The draft implementing act provides rules for managing conflicts of interest of actors such as the representatives in […]
From open data to knowledge: enhancing European resilience to health crises

The BY-COVID project is hosting a high-level event entitled “From open data to knowledge: enhancing European resilience to health crises” to highlight and discuss the value of open data and showcasing the impact of the project on science and society. The event will feature panel discussions with experts from various sectors, including policy-makers from the European and […]
EU4Health Stakeholders’ Conference

On 19 June 2024, the European Commission will host the EU4Health Stakeholders’ Conference in Brussels and online. The event will focus on important health priorities and will offer an opportunity to reflect on priorities, strategic orientations, and future work programs. The event programme will cover several topics: Health promotion & disease prevention Health systems Crisis […]
Medical devices: new guidance for industry and notified bodies

A new revision of the guidance available to applicants, marketing authorisation holders and notified bodies of medical devices has been published today. This question-and-answer document provides practical considerations on the implementation of the medical devices and in vitro diagnostic regulations for combinations of medicinal products and medical devices. Products that combine a medicinal product (or substance) and a medical device are regulated either under the pharmaceutical […]
31st annual PReS Meeting

31st annual European Pediatric Rheumatology (PReS) Congress will be held on September 11-14, 2024, in Gothenburg, Sweden. This year will be celebrated the 25th anniversary of the foundation of PReS and the organizing committee will celebrate the jubilee with an exciting and inspiring program reflecting recent advancements within the field. And, as always at PReS meetings, the […]
Conference – ‘The State of Health in the EU’

The Conference in the framework of the Belgian presidency of the Council of the European Union. Working together with healthcare professionals is imperative in order to both define and implement a comprehensive and sustainable European Health Union which is fit for the future. Future medicine should be characterised by the four ‘Ps’: it should be […]
European Mental Health Week, 13-19 May 2024

ERN ReCONNET strongly believes in the importance of Mental Health for all persons. Due to that, this year for the first time, ERN ReCONNET decided to join the social media campaign and raise awareness on this crucial aspect of our health that impacts our quality of life. The Network embraces and shares the same vision, mission, and […]
ERN ReCONNET Event: Good Practice Sharing Initiative

Save the date: Thursday May 30th 2024, from 15:00 to 17:00 CEST ERN ReCONNET invites you all to join our event! This important event has been organized by the ERN ReCONNET Working Group Research and Quality of Care led by Dr. Rosaria Talarico, our Scientific Coordinator, and ePAG Ilaria Galetti. Last year, the event was […]
Europe Day

Europe Day held on 9 May every year celebrates peace and unity in Europe. The date marks the anniversary of the historic ‘Schuman declaration’ that set out his idea for a new form of political cooperation in Europe, which would make war between Europe’s nations unthinkable. Schuman’s proposal is considered to be the beginning of what […]
Commission launches the Critical Medicines Alliance to help prevent and address shortages of critical medicines

The European Commission’s Health Emergency Preparedness and Response Authority (HERA), working with the Belgian Presidency of the Council of the EU, have today launched the Critical Medicines Alliance at the margins of the informal EPSCO Council meeting of health ministers, as part of the actions to build a strong European Health Union. The Alliance brings together national […]
MOOC “Health Data Ethics & Regulatory Frameworks in Rare Disease Research”

The Foundation For Rare Diseases in collaboration with Gianni Benzi Foundation, ERN EpiCARE and Eurordis Rare Diseases Europe, has codeveloped a MOOC (Massive Open Online Course) entitled “Health data ethics & regulatory frameworks in rare disease research”. This course is part of the European Joint Programme for Rare Diseases (EJPRD). The course is now open for registrations and can be accessed through […]
ERN ReCONNET – Endorsed Event: 43rd European Workshop for Rheumatology Research

It is with a great pleasure that ERN ReCONNET presents the 43rd European Workshop for Rheumatology Research (EWRR) that will be held for the first time in Genova, Italy, on May 9-11 2024. ERN ReCONNET has endorsed this important workshop, our Network experts are invited speakers and will be moderators of this event focused on […]
Conferenza Finale del progetto LIMeNar

ERN ReCONNET è official Collaborating Partner del progetto LIMeNar organizzato dall’Istituto Superiore di Sanità (ISS). Nell’ambito del Laboratorio di Health Humanities del Centro Nazionale Malattie Rare, a distanza di 8 anni dalla pubblicazione delle Linee di Indirizzo sulla medicina narrativa, l’ISS sta conducendo insieme alla Società Italiana di Medicina Narrativa (SIMeN) il progetto di ricerca “LIMeNar – […]
ERN ReCONNET would like to congratulate to our ePAG Ilaria Galetti for the European Pulmonary Fibrosis Federation (EU-PFF) Patient Advocacy Champion Award 2024. Ilaria was honored with this important award for her dedication and the impact she has truly made in the lives of those affected by Pulmonary Fibrosis. Congrats from all all of us, we are happy to […]
ERICA Webinar: c4c expert advice, patient and public involvement, data standards

The webinar is organized by c4c and it will be held on May 3rd, 2024 from 1 pm to 2 pm CEST. Speakers will be Mark Turner (c4c), Fenna Mahler (c4c), Pamela Dicks (NHS Scotland Children’s Research Network and eYPAGnet), and Becca Leary (University of Newcastle ) The webinar will be introduced by Prof. Mark Turner, the CEO of […]
Undiagnosed Day 2024

ERN ReCONNET joins this international campaign to shed a light on this important matter as 350 million people around the world live with an undiagnosed disease. Research on our human genome (e.g., genome sequencing, exosome, and other techniques) have the pave the way to new strategies and approaches providing answers to some of these patients […]
EU4Health: Survey on current and future health priorities

Targeted Consultation on EU4Health: have your say on future priorities, orientations and needs Help shape the direction of the #EU4Health funding programme for 2025! As we reach the mid-point of the EU4Health programme and building on last year’s successful consultation, the European Commission invites interested stakeholders to share their views on future priorities, orientations and needs for […]
European Health Data Space

The European Health Data Space (EHDS) will be a key pillar of the strong European Health Union. and is the first common EU data space in a specific area to emerge from the European strategy for data. In spring 2024, the European Parliament and the Council reached a political agreement on the Commission proposal for the EHDS. The […]
Share4Rare webinar on the 2024 research project call

Share4Rare will host a webinar (in English) Thursday, May 9th at 4:00 pm on the 2024 research project call. Share4Rare aims to enhance research on rare diseases through collaborative knowledge generation. The platform provides researchers with a secure infrastructure to conduct their investigations, accompanied by a team of professionals trained to provide personalised support and facilitate the research process. In connection of patient-driven research, […]
12th European Conference on Rare Diseases and Orphan Products

ERN ReCONNET is proud to announce to be an ECRD 2024 Associated Partner! The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. The event is coming up soon, don’t forget to do your registration. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, […]
ERICA Webinar: c4c trials, education and training

This webinar is organized by ERICA in collaboration with conect4children, EJP RD, and ERN BOND and it is scheduled for April 11th at 13:00 CEST. The webinar will be introduced by Prof. Mark Turner, the CEO of the non-profit. Chloe Bickerstaff, service lead will outline services for site identification, site level feasibility, and support during trials using case studies and metrics. Education and […]
Share4Rare: Medical books

Share4Rare is a project aimed at making a difference in rare diseases, where the entire community gathered by patients, carers, clinicians, and researchers, join forces. Share4Rare is funded by a Horizon2020 grant from the European Commission. The project is divided into work packages aligned with its strategic objectives. The Share4Rare‘s collection of medical books is […]
ERN ReCONNET Transition of Care Task Force

ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (rCTDs) is dedicated to improving rCTDs patient care across Europe. As part of its initiatives, ERN ReCONNET is also working on improving transitional care for European patients living with rCTDs. Transitional care, also known as transition, refers to a […]
ERN RECONNET – ENDORSED EVENT: II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES

ERN ReCONNET is pleased to present the II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES that will be held in Barcelona – Spain, on February 21st, 2024. ERN ReCONNET has endorsed this important meeting organized by Dr. Jordi Gratacós and Prof. Ricard Cervera, Coordinators of the XUEC-AIS (Network of Clinic Expertise Units – Systemic autoimmune diseases) […]
Rare Disease Day: discover how the EU is tackling rare diseases through the ERNs

Today we celebrate Rare Diseases Day. In the EU, up to 36 million people live with a rare disease, with around 80% of rare diseases having a genetic origin. Among them, 70% begin to manifest as early as childhood. To tackle rare diseases, the EU has implemented various initiatives aimed at helping improve the diagnosis, […]
ERN ReCONNET joins the light up initiative for the rare disease day (RDD 2024)

ERN ReCONNET joins the Light Up initiative for the Rare Disease Day 2024 by coloring Pisa and San Giovanni Rotondo (Foggia) Starting 2008, the Rare Disease Day is celebrated all over the world the last day of February. Every year, the international rare disease community organizes initiatives, events to raise awareness among general society and […]
ERN ReCONNET SLE Survey

The deadline for the ERN ReCONNET RarERN Path Systemic Lupus Erythematous (SLE) survey is Feb. 29th, so there is still time to tell us YOUR story, moreover now the languages are 14 with with French and German. Among other initiatives, the ERN ReCONNET is working on the development of organisational patient’s pathway models for rare connective […]
Rare Diseases in the EU: Joint Action shaping the future of ERNs JARDIN kick-off meeting

ERN ReCONNET is honored to join the major conference on Rare Diseases in the EU: Joint Action shaping the future of ERNs organized by the European Economic and Social Committee (EESC) with the Directorate-General for Health and Food Safety (DG SANTE) of the European Commission. The event will take place on March 8th, 2024 in Brussels, Belgium. The conference will conclude the […]
8th World Scleroderma Congress

ERN ReCONNET is glad to share with you the upcoming 8th World Scleroderma Congress that will be held on March 14- 16, 2024 in Prague (Czech Republic). The first 5 congresses in Florence 2010, Madrid 2012, Rome 2014, Lisbon 2016, Bordeaux 2018, and two online in 2020 and 2022 have been a success contributing to […]
EJP RD Final Conference

The EJP RD Final Conference is scheduled to take place from May 27th to May 28th, 2024 in Bari, Italy, this conference is set to bring together leading experts, professionals, and enthusiasts from around the world. Please note: the hybrid event is open in person only to invited people. The event is open for all online. Event Highlights: […]
Patient World Congress- World Scleroderma Congress 2024

The Federation of European Scleroderma Associations (FESCA) is pleased to announce that the Patient World Congress which will take place on the 15-16 March, 2024 in Prague, Czech Republic. The programme has been designed for patients and by patients, and will cover topics including, are the most recent scientific developments and treatment recommendations, management of […]
Let’s start the awareness month of Rare Diseases 2024!

February has started and ERN ReCONNET is very excited to be part of the global movement aimed at raising awareness of Rare Diseases! A few numbers and facts to recall the current status quo of Rare Diseases. Let’s start… 30 MILLION people are living with a rare disease in 48 countries in Europe Each rare disease affects fewer […]
ERN ReCONNET joined the “Day of the Zebra”

Since last year, ERN ReCONNET decided to join some international awareness days to raise awareness of relevant matters related to the healthcare ecosystem. As Network, we believe it is important to join the forces by participating to these social media campaigns. Jan. 31st is the Day of the Zebra, a day dedicated to shed a […]
EPH Conference

The main theme of the 17th EPH Conference Lisbon 2024 is: Sailing the waves of European public health: exploring a sea of innovation This year’s conference theme encapsulates the EPH collective mission. Just as explorers once set sail to discover new worlds, EPH, as public health professionals, embark on a journey of innovation and discovery in […]
EMA webinar for RDD: Orphan medicines development – ask the European regulator

The EMA’s Orphan Medicines Office is hosting an interactive webinar Rare Disease Day on 29 February 2024, to answer questions that developers of products for rare diseases or researchers in this field might have on orphan designations and rare disease development. The webinar will feature: short presentations on the background of orphan designation and the benefits it has brought […]
Drug repurposing for rare: progress and opportunities for the rare disease community

An interesting IRDiRC paper on a hot topic: Drug Repurposing. The article can be downloaded here 2024 – Jonker et al. Drug repurposing for rare progress and opportunities for the rare disease community <<Repurposing is one of the key opportunities to address the unmet rare diseases therapeutic need. Based on cases of drug repurposing in […]
ERN RECONNET – ENDORSED EVENT: The 5th International Symposium on IgG4 – Related Disease

VIDEO PILLS with PROF. EMANUEL DELLA TORRE where he introduces the Symposium and why the ERN ReCONNET endorsement is important are available in English and Italian. It is with a great pleasure that ERN ReCONNET invites you to register at the 5th International Symposium on IgG4-Related Disease that will be held for the first […]
EUROPE RARE DISEASE SUMMIT 2024

The second edition of the Europe Rare Disease Summit, set to take place on February 14th in Madrid, Spain. This is an in-person event aimed at improving and learning about Government Plans, Access & Financing, Clinical Research and Innovation, Artificial Intelligence and Data, and Social & Patients. Joining forces from all corners of Europe, this prestigious […]
Neurological Disorders and the European Reference Networks webinar

EpiCARE ERN, EURO NMD, ERN Ithaca & ERN RND have organized this interesting webinar focused on Neurological Disorders and the ERNs approach. Get this chance to get a deep dive into this world and register to this upcoming event! Webinar is scheduled for Jan. 18th at 17.00 CET. Registration is open.
“Real-World data, Machine learning and Deep analytics in rare diseases” webinar

The European Joint Programme on Rare Diseases is organizing the training webinar: “Real-World data, Machine learning and Deep analytics in rare diseases: Regulatory grade data collection for marketing authorization submissions – what is buzz, what is realistic?” that will be held online on 26 January 2024 from 2:00pm to 4:00pm CET. Registration is open here before 25 January 2024 at […]
EULAR 2024 | CONGRESS ABSTRACT SUBMISSION

EULAR invites you to submit an abstract to EULAR 2024, the European Congress of Rheumatology. Every year EULAR invites abstract submitters from all over the globe to present their work at the European Congress of Rheumatology. In 2024, we are creating a Congress with fully onsite programme. With the Abstract-related programme, all accepted abstract for presentation […]
Nature Article: Rare-disease researchers pioneer a unique approach to clinical trials

An important Nature article on the randomization and placebo groups studies, biomarkers, real-world data from wearables, and multi-center and adaptive trials in rare diseases written by Mike May. Pdf version can be downloaded here: Rare-disease researchers pioneer a unique approach to clinical trials
EU4Health call for tenders for the HTAR implementation

The EU4Health call for tenders to build capacity and knowledge for the implementation of the EU Health Technology Assessment Regulation (HTAR) is out. HaDEA has published the call for tenders HADEA/2023/OP/0032 – Building capacity and knowledge for the implementation of the EU Health Technology Assessment Regulation (HTAR) This call aims to : Provide training services to […]
The 2024 EU4Health Work Programme is out!

The 2024 EU4Health Work Programme is out: discover how it continues supporting health projects and initiatives in Europe. On 5 December, the European Commission adopted the 2024 EU4Health work programme. The EU4Health work programme for 2024 focuses on: Crisis preparedness (budget: € 485 517 000); Health promotion & disease prevention (budget: € 70 900 000); […]
European Research and Innovation Days (R&I Days) 2024

The European Commission’s annual flagship research and innovation event brings together policymakers, researchers, entrepreneurs, and the public to debate and shape the future of research and innovation in Europe and beyond. This fifth edition of the event will take place on 20 and 21 March 2024 both physically in Brussels and online, allowing everyone to get involved from anywhere. […]
European Innovation Council Summit 2024

Save the date Monday 18 March 2024 – Tuesday 19 March 2024 Brussels, Tour & Taxis The European Innovation Council Summit 2024 edition will be part of the Research & Innovation week (R&D week). In particular, this flagship event will take place on 18 and 19 March 2024 during the R&I week. The R&I week also includes […]
Research to Reality: Digital Solutions to European Challenges

The Research to Reality: Digital Solutions to European Challenges event will take place at The EGG in Brussels on 5 and 6 February 2024 from 8.00 to 17.00. This important event is organised under the Belgian presidency in cooperation with the European Commission, will take place in Brussels on 5 and 6 February 2024. This two-day event […]
Health workforce challenges: ways forward for policy making

Join this #EUHPP Live Webinar scheduled on Jan. 26th from 10.00 to 12.00. Health workers are the beating heart of every health system, as no health system can function and be sustainable without them. The global and regional demand for health workers is expected to increase in the coming decades, due to the ageing of […]
ERN ReCONNET transition of care survey for HCPs

In 2023, a Task Force of ERN ReCONNET dedicated to the transition of care has been established. This task force is led by Prof. Gabriele Simonini (AOU Meyer IRCCS, Firenze, Italy) and Prof. Tadej Avčin (Ljubljana University Medical Centre, Slovenia). The core team includes expert clinicians in pediatric and adult care, patient representatives (ePAGs), and […]
EURORDIS Patient Partnership Framework for the ERNs

EURORDIS launched the Patient Partnership Framework for the European Reference Networks (ERNs) – a new guide designed to support the implementation of stronger patient partnership through all strategic and operational phases of the ERNs’ activities. ERNs are patient-centred networks, where collaboration between health professionals and people living with a rare disease fundamentally drives and shapes the priorities […]
5th International Symposium on IgG4-Related Disease

The 5th International Symposium on IgG4-Related Disease will be held from Thursday April 4th to Saturday April 6th, 2024 at the Star Rosa Grand Hotel (Milan, Italy). The 1st International Symposium on IgG4-Related Disease was held in Boston (US) in 2011. At that Symposium, investigators agreed upon the name for the condition — “IgG4-Related Disease” […]
Belgian Presidency Council of European Union

The Belgian presidency programme sets out the priorities and main directions of the Belgian presidency of the Council of the EU. The Belgian term takes place from the 1st of January to the 30th of June 2024. Belgium assumes the rotating presidency for the thirteenth time, at a moment when the European Union stands at […]
Artificial intelligence workplan to guide use of AI in medicines regulation

This important workplan will help the European medicines regulatory network (EMRN) to embrace the opportunities of AI for personal productivity, automating processes and systems, increasing insights into data and supporting more robust decision-making to benefit public and animal health. The AI workplan, prepared under the joint HMA-EMA Big Data Steering Group (BDSG), ensures the EMRN remains at the […]
Joint Heads of Medicines Agencies (HMA)/European Medicines Agency (EMA) Multistakeholder workshop on Patient Registries

This joint two-day hybrid HMA/EMA workshop on Patient Registries on Feb. 12-13, 2024, at the European Medicines Agency, Amsterdam, the Netherlands. The workshop follows on the successful disease-specific workshops held between 2017 and 2019, as well as the EMA multi-stakeholder workshop on qualification of novel methodologies. The event will bring together representatives of registry holders, […]
EMA takes further steps to address critical shortages of medicines in the EU

Recently, EMA published details of the newly created solidarity mechanism developed by the EMA Medicines Shortages Steering Group (MSSG). This voluntary mechanism allows Member States to support each other in the face of a critical medicine shortage. The solidarity mechanism, which is based on an informal setup during COVID-19, will enable any Member State facing a critical shortage […]
FESCA event in the EU Parliament

Federation of European Scleroderma Associations (FESCA) held an event in the EU Parliament to present the findings of the patient survey, which highlighted the challenges faced by the Scleroderma community alongside the solutions to addressing these issues. At this roundtable speakers acknowledged the importance of the European References Networks (ERNs) in enhancing access to care, […]
2023 edition of the State of Health in the EU’s Synthesis Report

The Country Health Profiles are accompanied by a Synthesis Report presented by the European Commission, which highlights a selection of horizontal observations based on the analysis of the country profiles. The 2023 edition of the State of Health in the EU’s Synthesis Report consists of two parts. Part 1 presents a chapter on European health systems’ reforms and investments […]
Phenotypic similarity-based approach for variant prioritization for unsolved rare disease: a preliminary methodological report

Interesting scientific article on a prioritization methodology aimed at solving the undiagnosed rare diseases. Here is the abstract for more detailed information and the pdf can be downloaded at the bottom. Rare diseases (RD) have a prevalence of not more than 1/2000 persons in the European population, and are characterised by the difficulty experienced in […]
1st REMEDi4ALL International Drug Repurposing Conference

Join the first international drug repurposing conference “Bridging Boundaries: Innovating, Connecting & Reshaping Drug Repurposing”, #iDR24, co-organised by REMEDi4ALL, Beacon, and MeRIT on 6-7 March 2024 in Barcelona (Spain). REMEDi4ALL is Horizon Europe-funded project which aims at building a sustainable drug repurposing platform in Europe with an approach of co-creation amongst researchers, clinicians and patients. […]
New Sjogren’s Syndrome Disease Coordinator

Congratulations to Prof. Chiara Baldini from AOUP for being elected as our new Disease Coordinator for Sjogren’s Syndrome! Prof. Baldini has been working in Sjögren’s syndrome (SS) research since 1999. The focus of her research was initially SS clinical phenotyping; during her PhD thesis, she investigated the salivary proteomic biomarkers in SS and later she had […]
EURORDIS Awards 2024 Volunteer Award is our ePAG Silvia Aguilera

ERN ReCONNET is proud and happy to annouce that our ePAG Advocate, Silvia Aguilera, has been awarded of the EURORDIS 2024 Volunteer Award. Congratulations from the entire Network! At ERN ReCONNET, Silvia is the ePAG Advocate representing the Antiphospolid Syndrome (APS) and she is also the Chair of the Young ERN ReCONNET Working Group together […]
Universal Health Coverage Day

Universal Health Coverage Day on December 12th is the annual rallying point for the growing movement for health for all. It marks the anniversary of the United Nations’ historic and unanimous endorsement of universal health coverage in 2012. On Universal Health Coverage (UHC) Day 2023, global partners and communities are marking the campaign under the […]
Artificial intelligence act: Council and Parliament strike a deal on the first rules for AI in the world

Following 3-day ‘marathon’ talks, the Council presidency and the European Parliament’s negotiators have reached a provisional agreement on the proposal on harmonised rules on artificial intelligence (AI), the so-called artificial intelligence act. The draft regulation aims to ensure that AI systems placed on the European market and used in the EU are safe and respect fundamental rights and EU values. […]
Public Meeting on Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement

On December 14th, 2023, the FDA in collaboration with the Duke-Robert J. Margolis, MD Center for Health Policy (Duke-Margolis) will host a virtual public meeting titled “Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement.” The purpose of this public meeting is to highlight and build upon existing actionable approaches for engaging patients, […]
Position paper: Together4RD position statement on collaboration between European reference networks and industry

ERN ReCONNET is glad to share this interesting position paper focused to analyze several aspects associated with rare diseases system such as research and innovation, drug discovery and development, policy, and the role of the ERNs in tackiling the current obstacles. In particular, collaborations between the ERNs and industries are addressed by looking at ERNs […]
Financial Times forum: THE FUTURE OF PEOPLE-CENTRED HEALTH INNOVATION

Over the last four years, health systems and society have been pushed to extremes in responding to the COVID-19 crisis. In addition, many of the most important global trends today, including climate change, digitalisation, ageing and rising inequalities, affect health systems and are impacted by them. New tools and technologies, such as AI and genomic […]
2023 International Day of Persons with Disabilities – IDPD

This year, ERN ReCONNET is glad to join the annual International Day of Disabled Persons that was proclaimed in 1992 by the United Nations General Assembly resolution 47/3. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It […]
Revision of the General Pharmaceutical Legislation: Impact Assessment of European Commission and EFPIA proposals

The European Commission has proposed revisions to the Pharmaceutical Legislation, with the view to tackle unmet medical needs, competitiveness, access and affordability. This update represents a once-in-a-generation opportunity to strengthen the European biopharmaceutical ecosystem, if fit-for-purpose policy options are implemented in response to the ambitious goals set. That is why EFPIA commissioned the present Impact […]
#EUHPP LIVE WEBINAR State of Health in the EU 2023 Country Profiles & Synthesis Report

This #EUHPP Live Webinar will be launched on 15 December at 11.00 at a virtual event organised by the European Commission. The event will be opened by Sandra Gallina (Director-General, Directorate-General for Health and Food Safety, European Commission), followed by a joint presentation of the Country Health Profiles by Mark Pearson, Deputy Director for Employment, […]
EJP RD: Online Academic Education Course

The following Massive Open Online Courses (MOOC) “Diagnosing rare diseases: from the clinic to research and back” and “Introduction to Translational Research for Rare Diseases” are available for registration. The aim of these educational academic courses, that are free, is to better inform and train the rare disease community as well as increase awareness and […]
LUPHPOS – Lupus Physician’ Perspective On GlucocorticoidS- Survey

ERN ReCONNET is happy to extedn this important survey to all its members and friends. You are invited to participate in the LUPHPOS survey (Lupus Physician’s Perspective on GlucocorticoidS-Survey)! Corticoids (GC) play a key role in the treatment of systemic lupus erythematosus (SLE), especially in severe manifestations. Several studies highlight the harmful effects of chronic […]
ERN ReCONNET at the ERICA & EJP RD Joint Conference

ERN ReCONNET is glad to take part in the ERICA and EJP RD joint Conference that will take place in Amsterdam on November 21st. This is going to be a unique opportunity to explore the European and international rare disease research ecosystems, we would connect and consolidate our network with relevant stakeholders in the healthcare […]
60° CONGRESSO NAZIONALE SIR (SOCIETA’ ITALIANA DI REUMATOLOGIA) 2023

ERN ReCONNET sarà presente al 60° Congresso della Società Italiana di Reumatologia (SIR) che si svolgerà, come è ormai tradizione da diversi anni, presso il Palacongressi di Rimini, avremo il nostro booth al numero 10 (vedasi mappa per maggiori dettagli). Il Network sarà inoltre presente con i suoi esperti e membri che modereranno sessioni, presenteranno […]
Summary report of the TRANSFORM 2023 Conference

How can policymakers secure the promise of advanced therapies for patients over the next 6 months? Read the summary report of the TRANSFORM 2023 Conference to learn what our multi-stakeholder Alliance members and MEP Interest Group think is needed from decision-makers now, and in the next EU mandate. The current mandate of the European Parliament […]
One Health Conference – One Health for All, All for One Health

The recent epidemics and pandemics, in particular COVID-19, have made it unmistakably clear that human, animal, plant and environmental health cannot be dealt with separately, but need to be addressed in a ‘One Health’ approach. Their interdependencies need to be better acknowledged and require work at the interfaces in a multisectoral, transdisciplinary and an integrated […]
Beacon for Rare Diseases: The London Rare Disease Showcase 2023

Join Beacon for Rare, live and in-person for The London Rare Disease Showcase that aims to shed light on the latest innovations and advancements occurring in the field of rare diseases, with special emphasis on the vibrant rare disease landscape in the UK’s capital. The event is scheduled for 27th November 2023 from 9:30 to 17:00, […]
B1MG project draws to a close

The Beyond 1 Million Genomes project (B1MG) has been a €4M three-year Coordination and Support Action to support the design and testing phase of the European 1+Million Genomes (1+MG) initiative. This initiative facilitates signatory countries to realise a practice of personalised medicine and health, based upon a shared ‘framework’ and the infrastructure to safely access […]
XpanDH Webinar: The Risks for Europe Without a European Health Data Space

XpanDH will host its fourth webinar titled ‘Unlocking the Potential: The European Health Data Space and the Digital Future of European Healthcare‘ on Thursday 16 November 2023, 14:00 - 15:00 CET . In September 2020 the announcement of a new legislative proposal for a European Health Data Space (EHDS) was made by European Commission President Ursula von der […]
ERNs: A flagship EU action for patients with rare diseases

In the European Union (EU) alone, up to 36 million people are living with one of the over 6,000 distinct rare diseases. Each rare disease, however, has a low prevalence. The definition of a rare disease in the EU is one that affects fewer than 1 person out of 2,000. Currently, there is no known […]
Free online course. “MOOC From Lab to Clinic: Translational Research for Rare Diseases”

The French Foundation for Rare Diseases has announced the opening of a new facilitation window of the MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th. This update will be available until December 2nd 2023. In this course, you’ll get to learn from experts about how medicines are developed, tested in clinical trials, approved by regulators, and […]
ORPHANET latest resources

Orphanet has developed and produced several important resources for the rare disease ecosystem. Here is a list of the latest news: ORPHAcodes. Rare disease-specific coding systems are key for data collection and analysis, ORPHAcodes recognise more than 6,000 RD – implementing them fulfills patient needs, aids monitoring, and more. Read about the current state of ORPHAcode […]
IRDiRC Drug Repurposing Guidebook

The International Rare Diseases Research Consortium (IRDiRC) has developed a new guidebook to invigorate drug repurposing for rare diseases. Drug repurposing has often been suggested as a critical solution for developing more therapies for rare diseases. However, repurposing approaches for rare diseases has not been as impactful as anticipated. With the aim of addressing the challenges […]
ERICA Webinar:“Bridging the gap between promising preclinical data and a successful clinical trial”

This interesting ERICA webinar is focused on the importance of translational research referred to “bench-to-bedside” by showcasing two successful models for bridging the gap between preclinical and clinical research. Speakers will be the Paediatric Oncologist Professor Gilles Vassal from Institute Gustave Roussy, distinguished member of the ERNPaedCan, which will present the ACCELERATE, and Joanne Lee […]
VASCERN Summer School

The 1st Edition of the VASCERN Summer School on Rare Vascular Diseases will take place from September 23 to 28, 2024. This immersive learning opportunity will follow a hybrid format, combining on-site classes in Paris (France) with a mandatory online course. The VASCERN Summer School is open to medical students (e.g., undergrad, masters, PhD) as […]
OrphaNews is available

The new edition of OrphaNews is now available. Check the latest news on rare diseases from all over the world and organized by topics and regions. In particular, in this issue you will find the editorial “Rare Diseases International (RDI) and partners call on UN Member States to realise UHC for the global rare disease […]
EULAR 2024 | CONGRESS ABSTRACT SUBMISSION

EULAR has open its abstract submission to EULAR 2024, the European Congress of Rheumatology. Every year EULAR invites abstract submitters from all over the globe to present their work at the European Congress of Rheumatology. In 2024, there will be a Congress with fully onsite programme. With the Abstract-related programme, all accepted abstract for presentation will […]
Open Letter to the EU institutions and our national governments to stand by the ERNs

ERN ReCONNET supports the Open Letter to the EU institutions and our national governments to stand by the European Reference Networks (ERNs) as our Network Coordinator, Prof. Marta Mosca, together with Ilaria Galetti and Charissa Frank, as ERN ReCONNET European Patient Advocacy Group (ePAGs) representative signed the document. This is an official “call on the EU […]
New ERN ReCONNET webinar: Spectrum of skin manifestations in dermatomyositis

This webinar focuses on dermatomyositis (DM), an auto-immune disease, characterized by distinct skin lesions and a heterogeneous constellation of systemic manifestations, including myositis and interstitial lung disease. Guest speaker will be Dr Petra De Haes, she will share with us important insights on DM and will be moderated by Dr. Jiri Vencoksky. A good knowledge […]
ERICA Webinar: REMEDI4ALL / drug repurposing and clinical trial readiness by Anton Ussi

This webinar will discuss challenges associated with getting ready for and conducting clinical trials in drug repurposing, with a focus on differences between trial requirements for future on-label or off-label use. The discussion will also highlight key services and tools available to the community, as well as the REMEDi4ALL projects support offering. The webinar is […]
Challenges in Cancer Care

Under the Spanish Presidency of the Council of the European Union, the Ministry of Health of Spain will hold a High-Level Conference about “Challenges in Cancer Care”. Cancer continues to be one of the leading causes of morbi-mortality in the world. The data shows the enormous impact of cancer for the people who suffer from […]
Revision of the EU general pharmaceuticals legislation

The public consultation on the revision of the EU General Pharmaceuticals legislation is open until October 16th 2023. As part of the EU pharmaceuticals strategy, and drawing lessons from the COVID-19 pandemic, the European Commission plans to evaluate and revise the EU’s general legislation on medicines for human use to ensure a future-proof and crisis-resistant medicines […]
Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind

RDI and the Permanent Mission of Spain to the United Nations in New York are organizing the hybrid event “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” on Thursday, 21 September, 2023, from 13:00 to 14:30 EST. The event is co-organized with the NGO Committee for Rare Diseases, EURORDIS-Rare Diseases Europe, […]
“LUNG INVOLVEMENT and RHEUMATIC DISORDERS: from bench to bedside, from antigens to disease” Congress

ERN ReCONNET is pleased to invite you to this Congress that will be held at the UNIVERSITÀ DEGLI STUDI DI PAVIA (Pavia, Italy) from September 7th to 9th; as Network we are produ to support this initiatives and contribute to its dissemination. In particular, the Congress will allow the exchange of experience and expertise in […]
ERN ReCONNET joins the World Scleroderma Day

ERN ReCONNET is happy to join the World Scleroderma Day in collaboration with FESCA. As ERN ReCONNET we are proud to have developed a dedicated Systemic Sclerosis (SSc) webpage where relevant and important information, documents, references, and ERN ReCONNET webinars are available. In details, two webinars about “The Raynaud’s phenomenon” and “Diagnosis and classification of […]
ERN ReCONNET at EULAR 2023!

ERN ReCONNET will be at the EULAR Congress that will be held in Milan, Italy from May 31st to June 3rd. ERN ReCONNET will have a dedicated booth in Z7, visit us. The Coordination Team look forward to meeting you and sharing with you its latest network news and initiatives; also, ERN ReCONNET cool gadgets […]
We are hiring!

ERN ReCONNET is hiring! We are looking for 3 new members of our Team: • Business support manager • Registry Project Manager • Registry Researcher You can apply and find all the details at these links: • Business support manager (english version on pages 3-4) • Registry Project Manager (english version on pages 3-4) • Registry […]
ERN ReCONNET bursaries for EULAR 2023

We are very happy to announce that the ERN ReCONNET Young Working Group is launching a call for applications to receive bursaries to attend the EULAR 2023 congress. There are 3 bursaries of 700€ available for healthcare professionals under 40 years of age working in ERN ReCONNET centres (Full Members or Affiliated Partners) and 4 […]
ERN ReCONNET lights up the Leaning Tower of Pisa

ERN ReCONNET renews its appointment with the illumination of the Leaning Tower of Pisa on the occasion of World Rare Disease Day to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. As was the case in 2020 and 2021, on Monday 28 February from […]
25th Congress on Immune Pathology and Orphan Diseases

The 25th Congress on Immune Pathology and Orphan Diseases will be held in Turin on 27-29 January 2022. The event will be hybrid. Additional info on the upcoming 25th Congress here and at patologiaimmune@seleneweb.com You can find here the program of the event.
10th UDNI Conference (31 January- 1 February 2022)

The 10th Undiagnosed Diseases Network International Conference will be held in Turin (Italy) on 31 January – 1 February 2022. The event will be hybrid. Additional info and registration to the upcoming 10th UDNI conference at udni.torino2022@gmail.com You can find here the program of the event.
Le ERN verso l’integrazione (30 novembre 2021)

I perché di questo evento Nel febbraio 2020, per celebrare la Giornata Mondiale delle Malattie Rare, le tre reti ERN (European Reference Networks) a coordinamento italiano (ERN ReCONNET, MetabERN e ERN Bond), Uniamo FIMR Onlus, ePAG Italia e il Centro Nazionale Malattie Rare dell’Istituto Superiore di Sanità hanno organizzato a Pisa un convegno in presenza, […]
Skin manifestations in EDS: what are they and how to manage them

Register to the ERN ReCONNET live webinar for healthcare professionals “Skin manifestations in EDS: what are they and how to manage them” by professors Fransiska Malfait (Ghent University) and Alberto Sulli (University of Genoa). 6th October 2020 at 3:00 PM (CET) → Register here Skin manifestations, such as skin hyperextensibility, skin fragility, poor wound healing, abnormal scar formation and easy […]
The Rheumatological point of view of EDS Syndromes: Articular manifestations

Register to the ERN ReCONNET live webinar for healthcare professionals “The Rheumatological point of view of EDS Syndromes: Articular manifestations” by professor Maurizio Cutolo (University of Genoa). 24th July 2020 at 2:00 PM (CET) → Register here How to recognize the Ehlers-Danlos (EDS ) syndromes through articular symptoms? Among the 13 EDS subtypes actually described, 12 of them […]
Clinical practice guidelines: what do you need to know

Save the date! Register to the ERN ReCONNET live webinar for patients “Clinical practice guidelines: what do you need to know” by Ilaria Galetti (European Patient Advocacy Group representative) and Rosaria Talarico (Azienda Ospedaliero Universitaria Pisana). 20th July 2020 at 3:00 PM (CET) → Register here The webinar will provide an overview on what Clinical Practice Guidelines are and […]
Webinar EDS Syndrome: a disorder with many faces

The Ehlers-Danlos syndromes comprise a clinically and genetically heterogeneous group of heritable connective tissue disorders, which are characterized by joint hypermobility, skin hyperextensibility, and tissue friability. The 2017 International EDS Classification recognizes 13 EDS subtypes, for which defects have been identified in 19 different genes that code for extracellular matrix proteins. Some of these conditions […]
Webinar on COVID-19 and Rare Connective Tissue and Musculoskeletal diseases

In the context of the “COVID-19 Clinical Management Support System” launched by the European Commission, DG SANTE organises a series of webinars to support clinicians and other healthcare professionals at the frontline of the care of COVID-19 patients. These webinars will bring the expertise and recommendations of several experts from the 24 ERNs in the […]
Webinar “Sex hormones and COVID-19: how is the game?”

Save the date! Register to the ERN ReCONNET live webinar for healthcare professionals “Sex hormones and COVID-19: how is the game?” by professor Maurizio Cutolo (University of Genoa). 1st June 2020 at 2:00 PM (CET) → Register here Already from the earliest reports regarding the lethality risk after the COVID-19 infection, it is confirmed a […]
Updates on COVID-19 outbreak

COVID-19 is a disease caused by a new type of coronavirus (SARS-CoV-2), first identified in December 2019 in the Chinese municipality of Wuhan. At the end of February 2020, Italy reported a significant increase of COVID-19 cases concentrated in the northern regions of the country. By March 2020, all EU member states had reported quickly increasing COVID-19 cases. The current COVID-19 […]
European Survey on Patient Education

Lupus Europe and ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link, select […]
ERN ReCONNET lights the Leaning Tower of Pisa

The colours and the logo of the World Rare Diseases Day will be projected from 6.30 pm to 11 pm on 29th February 2020 on the Leaning Tower of Pisa, in order to spread public and political awareness of rare diseases all over the world through a worldwide known icon. This event, made possible thanks […]
Live webinar “Pregnancy in rCTDs”

Save the date! Register to the ERN ReCONNET webinar “Pregnancy in rare and complex connective tissue and musculoskeletal diseases” by Silvia Aguilera (ePAGs representative for Antiphospholipid Syndrome) and professor Marta Mosca (Azienda Ospedaliero Universitaria Pisana). 27th January 2020 at 15:30 PM (CET) → Register here In this Webinar Silvia Aguilera will provide the experience of a patient […]
Live webinar “The Raynaud’s phenomenon”

Save the date! Register to the first 2020 ERN ReCONNET webinar “The Raynaud’s phenomenon” by professor Vanessa Smith (Ghent University). 14th January 2020 at 12:30 PM (CET) → Register here In this Webinar the Raynaud’s phenomenon (definition, its prevalence, primary and secondary Raynaud’s phenomenon, how to distinguish a primary from a secondary Raynaud’s phenomenon, role […]
Live Webinar “The real roles of Vitamin D in Connective Tissue Diseases”

Save the date! Register to the first ERN ReCONNET live webinar for healthcare professionals “The real roles of Vitamin D in Connective Tissue Diseases” by professor Maurizio Cutolo (University of Genoa). 10th December 2019 at 1:30 PM (CET) → Register here Maurizio Cutolo is Past President of the European League Against Rheumatism (EULAR) and Past […]
call for new members to join existing 24 ERNs

The first call for new members to join existing 24 ERNs is open until 30 of November 2019. HOW TO APPLY TO BECOME A MEMBER OF AN ERN? The membership application process will involve several steps: Review the information that is included on the Commission webpage related to the European Reference Networks and the applicable […]
How to apply to become a member of an ERN?

The process how to become a member of an ERN is defined in the Implementing Acts: a healthcare provider (HCP) wishing to become a member of an ERN will have to pass an assessment process based on the criteria in Delegated Decision (2014/286/EU) Annex II, on the Implementing Decision (2014/287/EU) and on the amendment to the Implementing Decision (2019/1269). The membership application […]
Systemic Sclerosis Patients’ Stories: tell us your experience

Among other initiatives, the ERN ReCONNET is mapping the existing patient’s pathways followed for every rare connective tissue diseases (rCTDs) covered by ERN ReCONNET in all the Healthcare Providers of the Network. The aim of this work is to identify the current practice across the different ERN ReCONNET centres and identify eventual challenges and best […]
Documentation to prepare applications for the 2019 ERN Call

Three key documents are now available for candidates to prepare their applications for the imminent Call for membership to existing European Reference Networks. The “ERN Assessment manual for applicants: description and procedures” provide the applicants with an overview of the assessment and the application process to join an existing ERN, called “Assessment programme of the […]
Call for new members to join existing ERNs soon launched

The European Commission will launch in the coming weeks the first call for new members to join existing 24 ERNs, following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU. The concrete date for the opening and closing of the call will be announced soon. You can find […]
EULAR European Congress of Rheumatology (12-15 June 2019, Madrid)

EULAR will take its Annual Scientific Congress to Madrid, Spain, from 12-15 June in 2019. The annual EULAR Congresses comprise the major event in the calendar of world rheumatology. EULAR 2019 will provide an unique event for the exchange of scientific, clinical and patientfocussed information on a global basis, and will offer a platform to facilitate […]
CPMS FAQ and Answers webinar (23rd May 2019 at 14:00 CET)

The Clinical Patient Management System (CPMS) is the IT Platform for Clinical Consultations between ERN Members. The CPMS aims at supporting ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe. The CPMS is a secure Software as a Service (SaaS) that enables […]
EURORDIS Membership Meeting 17-18 May 2019 Bucharest

The EURORDIS Membership Meeting (EMM) will take place on 17 – 18 May 2019 in Bucharest. Each year, EURORDIS holds the General Assembly attended by close to 200 of its member organisations. These events are excellent networking opportunities for patients to meet other patient advocates from around the world. It is also a moment to get […]
Patients’ survey on ethical, legal and privacy issues

We have recently developed, together with the precious help of the ERN ReCONNET European Patient Advocacy Group (ePAG), an online survey to collect the feedback of the community of patients affected by rare and complex connective tissue diseases on different aspects related to ethical, legal and privacy issue, and on cross-border healthcare. Thanks to our ePAGs, the survey is […]
3rd ERN ReCONNET PLENARY MEETING (PISA, 13-14 JANUARY 2019)

The 3rd Plenary Meeting of the ERN ReCONNET will be held from 13th to 14th January 2019 in Pisa, at the Sant’Anna School of Advanced Studies. The Meeting will focus on the following topics: the patients’ point of view from ePAGs, the next call for new HCPs and Affiliated Partners, the ERN Continuous Monitoring, the Clinical Patient Management […]
New ERN information flyer and information video released

During the 4th European Reference Networks Conference, the European Commission has released a new version of the ERN information flyer and of the ERN information video. They both aim at informing patients and healthcare professionals about how the ERNs work and introduce how a doctor will convene in “virtual” panels of medical experts from across […]
55th Congress of Italian Society of Rheumatology (21-24 November 2018)

The 55th Congress of Italian Society of Rheumatology will be held from 21st to 24th November 2018 in Rimini, Italy. ERN ReCONNET will be present to the Congress with a booth. This is the main event for the italian rheumatologists and this year ERN ReCONNET is starring in the International Symposium on Rare Diseases that will be […]
4th conference on European Reference Networks ERNs in action

The 4th Conference on European Reference Networks “ERNs in action” will be held on 21 and 22 November 2018 in Brussels, Belgium. ERN ReCONNET will be present to the Conference with 10 delegates. This two-day event will gather more than 400 participants – National authorities, healthcare providers members of the ERNs, health professionals, hospital managers, […]
EURORDIS Summer School (10-14 June 2019, Barcelona)

The next edition of the EURORDIS Summer School face-to-face training will take place 10-14 June 2019, in Barcelona. You can apply here for this training. The deadline for applications is 15th November 2018. The results of the applications will be communicated by end January 2019. The Summer School is made up of one week of face-to-face training […]
RMD Open Supplement on Clinical Practice Guidelines

We proudly announce that the Supplement on State of the Art on clinical practice guidelines on rare and complex Connective Tissue Diseases is now available on RMD Open. This is one of the first results of the collaboration of Healthcare Providers and Patients in the framework of the European Reference Network on Rare and Complex […]
International Symposium on the Ehlers-Danlos Syndromes

International Symposium on the Ehlers-Danlos Syndromes 26th-29th September 2018, Ghent, Belgium The International Symposium on the Ehlers-Danlos Syndromes (EDS) is a state-of-the-art meeting in which new research on clinical advances and the molecular and pathogenic mechanisms underlying EDS and related syndromes is discussed. The general theme of the 2019 meeting is “Interaction and signaling: recurrent themes […]
8th EULAR Course on Capillaroscopy

8th EULAR Course on Capillaroscopy in Rheumatic Diseases Genoa, 13th-15th September 2018 The early diagnosis of Connective Tissue Diseases has been one of the most important achievement in Rheumatology. The aim of the 8th intensive and interactive EULAR Course on Capillaroscopy is to provide all participants with an update on the power of the safe and non-invasive […]
2nd ERN ReCONNET PLENARY MEETING REPORT

4th-5th-6th February 2018 Scuola Superiore Sant’Anna, Pisa, Italy Introduction The second ERN ReCONNET plenary meeting took place on 4th, 5th and 6th February 2018 in Pisa, at the Sant’Anna School of Advanced Studies. The meeting focused on the following activities: Report and overview of the work done in the first year WP4, 1st year. Definition of IT environment. […]
ERN ReCONNET WP3 STEP3 MEETING REPORT

5th November 2017 | Hotel Hilton Bayfront, San Diego, USA Introduction After the ERN ReCONNET Meeting held in Madrid during the EULAR 2017 congress, the members of the Network met again on 5th November 2017 at the Hotel Hilton Bayfront in San Diego, during the ACR 2017 annual meeting. The meeting main objectives were: Presentation of WP3 […]
ERN ReCONNET EULAR 2017 MEETING REPORT

15th June 2017 | Madrid, Spain Introduction After the ERN ReCONNET Kick-off Meeting held in Pisa 26th-28th May 2017, the members of the Network met again on 15th June during the EULAR 2017 congress in Madrid. The meeting main objectives were: Steering Committee meeting: report on news on ERN ReCONNET General Assembly meeting: discussion of methods and […]
ERN ReCONNET KICK-OFF MEETING REPORT

26th-28th May 2017 | Pisa, Italy 26th May 2017 AULA MAGNA SCUOLA MEDICA, Via Roma 55, Pisa 27th and 28th May GRAND HOTEL DUOMO PISA Via Santa Maria, 94 – 56126 PISA ERN ReCONNET KICK-OFF MEETING REPORT Introduction The 24 European Reference Networks were formally launched on March 9th 2017, during the 3rd on ERNs that took place in […]

ERN ReCONNET

Welcome

Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach

Welcome to ERN

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Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website.

An information hub with a patient-centered approach