Our Network – ERN ReCONNET

Our Network – Overview of 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

The mission of the ERN-RECONNET is to develop a framework for the delivery of high quality, innovative, sustainable and equitable standard of care and practice for better access to care of European patients with rCTDs. Specifically, the ERN-RECONNET is conceived as a big-system going beyond geographical boundaries where:

  • healthcare providers with high level of expertise in the field of rCTDs are allied for the identification of standard best practice and therapeutic options to level up the management of diseases;
  • clinicians with different expertise and from different leading centres work together embracing a multidisciplinary approach for the management of complex cases;
  • new training approaches for health professionals are conceived and promoted to improve their professionalism;
  • patients and caregivers have access to up to date information on practice, therapeutic options and education for the management of rCTDs;
  • eHealth solutions for the empowerment of patients and the fostering of research are developed and tested;
  • patients are free to move across European Countries – virtually or physically – to find the best solution for the preservation of their health;
  • experts in the field of health economics and healthcare organization, regulatory bodies, healthcare providers (HCPs), etc. work together for the development of strategies and solutions for a sustainable management of rCTDs in Europe.

The ERN-RECONNET purpose is to serve as a meeting point of needs, feedbacks and expertise for HCPs and the external environment (other networks, authorities, health systems, private sectors, HTA bodies, etc.), but also as a promoter of harmonized strategies and actions to (i) improve the standards of care across Europe, (ii) reduce inappropriate practice variation and disparities in health care, (iii) support transparent decision making, (iv) enhance translation of research into practice, (v) support efficient use of resources, (vi) reinforce research and epidemiological surveillance and (vii) improve knowledge for physicians, healthcare providers, patients and families.

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.

List of Full Members

Belgium

Czech Republic

Denmark

Finland

France

Germany

Greece

Italy

The Netherland

Poland

Portugal

Romania

Slovenia

Spain

Sweden

Coordinator:

Professor Marta Mosca

AOU Pisan

List of Affiliated Partners

Austria
– Medical University Innsbruck, Center for Inherited and Autoimmune Connective Tissue Diseases, Department of Human Genetics (Associated National Centre)

Croatia
– University Hospital Centre Osijek (Associated National Centre)

Estonia
– Tartu University Hospital (Associated National Centre)

Hungary
– Semmelweis University (National Coordination Hub)

Latvia
– Children’s Clinical University Hospital, Riga, Latvia (Associated National Centre)
– Pauls Stradins Clinical University Hospital, Riga, Latvia (Associated National Centre)

Lithuania
– Hospital of Lithuanian University of Health Science Kauno Klinikos (Associated National Centre)

Luxembourg
– Centre Hospitalier du Luxembourg (National Coordination Hub)

Malta
– Mater Dei Hospital (National Coordination Hub)

Patient Representatives – Our ePAG Advocates

ERN ReCONNET has established a formal partnership with patients’ representatives (ePAG Advocates) that are actively integrated into the Network. Click here to see the updated full list of ERN ReCONNET ePAG Advocates.

 

Activities

ERN ReCONNET promotes different types of activities, ranging from Educational and Training activities, Registries, Virtual Consultations and much more. Visit the page “Activities” by clicking here to learn more about the different activities organised by ERN ReCONNET.

Working Groups

5 Working Group (WG) are formally established in ERN ReCONNET to further support its actions and initiatives:

Disease Groups

In addition, for each of the diseases covered by ERN ReCONNET, a specific Disease Group is available:

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