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
ERN ReCONNET WEBINARS: Registration for NEW webinar is OPEN!

Welcome to ERN ReCONNET

 
 
 
 
 
 
 
 
 
 

LATEST NEWS!

European Reference Networks

Over 30 million people in Europe are affected by more than 6.000 rare diseases (RD).

Unfortunately, many of them still have limited access to timely diagnosis and high-quality treatment. Moreover, the scientific evidence in RD may be scarce because of low numbers of patients and improving the evidence by pooling data in small populations can often be a challenge. In order to address these challenges, the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across the European Union (EU).

The mission of the ERNs is to tackle low prevalence and rare diseases that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and low prevalence diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.

Since 2017, 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients’ care pathways and many other fundamental topics.

ERN ReCONNET

ERN ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases.

The main aim of ERN ReCONNET is to improve the management of rare connective tissue and musculo-skeletal diseases (rCTDs) across the EU.
The main objectives of ERN ReCONNET are:

  • Realisation of the potential of European cooperation among rCTDs stakeholders, by providing a stable and fully functioning European infrastructure on rCTDs
  • Provision of highly-specialised care for rCTDs patients and promotion of improvements in the cost-effective delivery of diagnosis, management and monitoring of rCTDs patients
  • Pooling, advancing and exchanging of knowledge and information on rCTDs by providing training and education for rCTDs stakeholders and by facilitating the mobility of expertise
  • Stimulating and encouraging collaborative patient-centered research in rCTDs
  • Promoting the empowerment and the involvement of rCTDs patients in the rCTDs community

ERN ReCONNET currently covers the following rCTDs:

The ERN ReCONNET is conceived as a multi-stakeholder infrastructure going beyond geographical boundaries which purpose is to serve as a meeting point of needs, feedbacks and expertise for HCPs, patients, families and for other stakeholders involved in rCTDs (other networks, authorities, health systems, private sectors, etc.).

ERN ReCONNET currently involves 63 Healthcare Providers: 54 Full Members and 9 Affiliated Partners (APs) over 23 European countries: Austria, Belgium, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Slovenia, Spain, Sweden, and The Netherlands.

In addition, ERN ReCONNET has established a formal partnership with patients’ representatives (ePAG Advocates) that are actively integrated in the Network.

DISSEMINATION MATERIALS

  • ERN ReCONNET Awareness Day Campaigns
    ERN ReCONNET Awareness Day Campaigns

    Here is a collection of the dedicate ERN ReCONNET dissemination slides developed and shared on our social media channels (LinkedIn, X, YouTube, Instagram, @Threads, and Facebook) during the selected awareness days/month.             

  • Newborn Screening (NBS) Awareness Month
    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
    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: Clinical Practice Guidelines And Clinical Decision Support Tools
    ERN: Clinical Practice Guidelines And Clinical Decision Support Tools

    There are a number of challenges surrounding the development of Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) for rare diseases. One of the most relevant barriers is the lack of high-quality evidence, which cutting-edge methodological frameworks like GRADE rely on. Therefore, there is a need for specific methodological approaches that can provide […]

  • Cross-border patient healthcare (Directive 2011/24/EU and its updates)
    Cross-border patient healthcare (Directive 2011/24/EU and its updates)

    The 2022 Report on the Member State data on cross-border patient healthcare following Directive 2011/24/EU is available for consultation. 2022 Report Cross-border patient healthcare data   In addition, a new brochure has been developed, it can be downloaded here: Cross-border healthcare brochure     More info about Cross border healthcare can be found here.

  • Undiagnosed Day 2024
    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 […]

  • International Women’s Day
    International Women’s Day

    ERN ReCONNET recognizes the value of women in our society and in our Network. Thank you all for what you do! 

  • New ERN ReCONNET video to launch the RARE DISEASES AWARENESS MONTH 2024!
    New ERN ReCONNET video to launch the RARE DISEASES AWARENESS MONTH 2024!

        ERN ReCONNET launched its initiatives for the Rare Disease Awareness Month with this video!

  • ERN ReCONNET Factsheet
    ERN ReCONNET Factsheet

    The European Commission has developed this relevant factsheet aimed at presenting the ERN ReCONNET and explaining the Network actions, initiatives, activities as well as its mission and goals. ERN ReCONNET Factsheet

  • ERN Assessment Manual for Applicants
    ERN Assessment Manual for Applicants

    Here is the document developed by the EC to help the applicants interested in joining the ERNs. ERNs – Call Assessment Manual ERNs – HCPs – Evaluation – FAQ

  • EC and EURORDIS documents in support of patients
    EC and EURORDIS documents in support of patients

    Here is a list of relevant documents in support of rare/complex patients developed by EURORDIS and the European Commission: Thinking to apply as an ePAG advocate: Short guide (EURORDIS) Patient Guide to the ERNs Evaluation (EURORDIS) Patient Guide to the ERNs: FAQ factsheet European Commission flyers for patients and healthcare professionals translated in 28 languages. […]

  • Clinical Patient Management System (CPMS): EU documents
    Clinical Patient Management System (CPMS): EU documents

    Here is a collection of important dissemination materials developed by the European Commission on the Clinical Patient Management System (CPMS).  More info and details about this important system can be found here. EU – CPMS – Project Book EU – CPMS – Description

  • ERN ReCONNET Clinical Patient Management System (CPMS)
    ERN ReCONNET Clinical Patient Management System (CPMS)

    ERN ReCONNET has translated the CPMS description in 24 different languages, here is the list: ERN ReCONNET. CPMS – Bulgarian ERN ReCONNET. CPMS – Croatian ERN ReCONNET. CPMS – Czech ERN ReCONNET. CPMS – Danish ERN ReCONNET. CPMS – Dutch ERN ReCONNET. CPMS – English ERN ReCONNET. CPMS – Estonian ERN ReCONNET. CPMS – Finnish ERN ReCONNET. CPMS […]

  • ERN Exchange Program
    ERN Exchange Program

    ERN ReCONNET Exchange Program aims at enhanceìing knowledge sharing and stimulating collaboration between health care professionals in ERNs and strengthen capacities and organisation of the ERNs. ERN ReCONNET launched 2 calls for interest (of a total of 3 calls of interest): The first edition started in 2021, after the first call, 3 exchanges were organised and the program was […]

  • New ERNs brochures from the European Commission in 26 languages
    New ERNs brochures from the European Commission in 26 languages

    The updated informative brochures on the European Reference Networks has been recently developed by the European Commission. The brochure was translated in 26 European languages: Bulgarian, Spanish, Cech, Danish, German, Estonian, Greek, English, French, Irish, Croatian, Italian, Latvian, Lithuanian, Hungarian, Maltese, Dutch, Polish, Portuguese, Romanian, Slovak, Slovenian, Finnish, Swedish, Norwegian, Ukrainian.  Brochures (pdf) are available […]

  • ERN ReCONNET Posters
    ERN ReCONNET Posters

    Here are  the ERN ReCONNET posters presented at the conferences and meetings the Coordination Team has joined in 2023. November 2023. Poster presented at the ACR 2023 in San Diego (USA) and at the SIR 2023 in Rimini (Italy). ERN ReCONNET Poster. 2023 ACR – SIR (pdf)             May – […]

  • ERNs: A flagship EU action for patients with rare diseases
    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 […]

  • CPMS National Hubs brochures
    CPMS National Hubs brochures

    The informative brochures on CPMS National Hubs have been translated by the National Hubs responsibles in the main european languages (deutsch, french, italian, dutch, portuguese, romanian). Click on the image to open the CPMS National Hubs Brochures page where you can find the documents to dowload.  

  • EULAR Guidance for patients with RMDs about COVID-19 outbreak
    EULAR Guidance for patients with RMDs about COVID-19 outbreak

    The European League Against Rheumatism (EULAR) developed a Guidance for people with Rheumatic Musculoskeletal Diseases (RMDs) about COVID-19 outbreak. Click on the image to download the ERN ReCONNET infographic based on the EULAR Guidance.

  • ERN ReCONNET Dissemination Materials (2019)
    ERN ReCONNET Dissemination Materials (2019)

    Patients’ involvement How to get involved CPMS This leaflet describes the role of patients in the ERN ReCONNET, their activities inside the ERN, how to become an ePAG representative or an ePAG member organisation. This leaflet describes how to get involved in the ERN ReCONNET activities, as patient/patients’ organisation, as healthcare provider, or as an […]

  • European Commission Flyers
    European Commission Flyers

    Information flyer for patients and healthcare professionals België Hrvatska Polska Belgique Ireland Portugal България Italia România Česko Latvijas Slovenija Danmark Lietuva Slovensko Deutschland Luxembourg Suomi Eesti Magyarország Sverige Ελλάδα Malta United Kingdom España Nederland France Norge    

  • European Commission brochures (2017)
    European Commission brochures (2017)

    European Commission brochures English Dansk Polski Deutsch Eesti Português Français Ελληνικά Română Nederlands Latviešu Slovenčina Español Lietuvių Slovenščina Italiano Magyar Suomi Hrvatski Български Svenska Čeština Malti Norwegian    

  • European Commission flyers (2017)
    European Commission flyers (2017)

    European Commission flyers on ERNs English Dansk Polski Deutsch Eesti Português Français Ελληνικά Română Nederlands Latviešu Slovenčina Español Lietuvių Slovenščina Italiano Magyar Suomi Hrvatski Български Svenska Čeština Malti    

  • ERN ReCONNET dissemination materials
    ERN ReCONNET dissemination materials

      General leaflet Patient’s involvement How to get involved CPMS This leaflet describes the specific objectives of the ERN ReCONNET, the diseases covered by the project, the role of the patients and of the Clinical Patient Management System. This leaflet describes the role of patients in the ERN ReCONNET, and their activities inside the ERN. […]

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