ERN RECONNET

01/12/2025

📢 LAST CHANCE TO REGISTER: Don't Miss Today's ERN ReCONNET Meeting!
⏰ STARTING SOON!

Join us TODAY, December 1, 2025, from 15:00 to 17:00 CET for the "Sharing Good Clinical Practice 2025" event.

There is still an opportunity to register and hear internationally recognized experts share best practices for rare and complex connective tissue and musculoskeletal diseases.

The event is open to everyone!

➡️ REGISTER NOW HERE: https://bit.ly/4hX6lZG

Don't miss this key event for the rare disease community.

⭐ Don't Miss the ERN ReCONNET: Sharing Good Clinical Practice 2025 Event!
Join us on 1st December 2025 from 15:00 - 17:00 CET for an insightful session packed with best practices for rare and complex connective and musculoskeletal diseases. This event is open to everyone interested in the field!
Hear internationally recognised experts discuss crucial topics.
Registration is officially open! Secure your spot for this key event for the rare disease community.
👉 REGISTER NOW HERE: https://us02web.zoom.us/meeting/register/txEX3hNHSdKMqzuBcmVvbQ
Share this post to spread good clinical practice!

27/11/2025

🎓 Register now for the next ERN RECONNET webinar “Quality of life in Relapsing Polychondritis (RP)”.
It will take place on the 3rd of Dec 2025, at 16 CET

✍️ Register now at this link: rb.gy/kh6tmw

The speakers for this webinar will be Prof. Laurent Arnaud and Dr. Philippe Mertz, moderated by the ePAGs Lisa Matthews and Camelia Bucsa.

💡 This webinar is dedicated to Relapsing Polychondritis (RP)
🎯 The target audience will be patients, healthcare professionals, caregivers, and family members.

⚙️ ERN ReCONNET resources on RP are freely available and can be consulted here: https://reconnet.ern-net.eu/disease-rp/

🗞 Newsletter subscription: bit.ly/44wk7La
💻 All webinars can be seen here: https://reconnet.ern-net.eu/webinar/

21/11/2025

📢 Save the date & register for the upcoming High-Level Meeting (HLM) on a European research and innovation ecosystem for rare diseases!

The High-Level Meeting (HLM) on a European Research and Innovation Ecosystem for Rare Diseases will bring together policymakers, researchers, clinicians, patient advocates, and key stakeholders to advance coordinated EU action, stronger infrastructures, and long-term support for rare and complex diseases.

ERN ReCONNET will proudly take part in the discussions, represented by:
✨ Prof. Marta Mosca, Network Coordinator
✨ Ilaria Galetti, our ePAG Advocate

📍 The meeting will take place December 9–11, 2025 – Brussels

🔗 Check the programme & register: https://lnkd.in/db9T2yFV

🚨 A key objective of the HLM is supporting the EU’s adoption of a European Declaration on Rare & Complex Diseases, promoting long-term collaboration, innovation, and better access to care for the rare disease community.

20/11/2025

⭐ Don't Miss the ERN ReCONNET: Sharing Good Clinical Practice 2025 Event!
Join us on 1st December 2025 from 15:00 - 17:00 CET for an insightful session packed with best practices for rare and complex connective and musculoskeletal diseases. This event is open to everyone interested in the field!
Hear internationally recognised experts discuss crucial topics.
Registration is officially open! Secure your spot for this key event for the rare disease community.
👉 REGISTER NOW HERE: https://us02web.zoom.us/meeting/register/txEX3hNHSdKMqzuBcmVvbQ
Share this post to spread good clinical practice!

19/11/2025

🎓 Don’t miss our webinar TODAY at 16 CET on “Everything you always wanted to know about Ehlers-Danlos Syndromes (EDS) – Part two” with Dr. Marco Castori, moderated by the ePAGs Charissa Franck and Eva Collado.

✍️Make sure you're registered at this link: rb.gy/rdxrlv
💡 This webinar is dedicated to Ehlers-Danlos Syndromes (EDS).
🎯 The Target audience will be patients, caregivers, and family members.

⚙️ ERN ReCONNET resources on EDS are freely available and can be consulted here: https://reconnet.ern-net.eu/disease-eds/

🗞 Newsletter subscription: https://bit.ly/48dO86Q
💻 All webinars can be seen here: https://reconnet.ern-net.eu/webinar/

17/11/2025

🎉 New ERN ReCONNET Disease Coordinators Elected! 🎉

The new ERN ReCONNET Disease Coordinators were elected for the 2025–2028 mandate!

A big thank you to our highly engaged Board of Network, to the outgoing Coordinators for their important contributions, and to all newly elected colleagues for stepping into this crucial role.

👏 Congratulations to all!
We look forward to continuing our work together!

14/11/2025

🌍 Day 2 in Ljubljana: ERN ReCONNET Transition Training Workshop!

We are now in the second and final day of the workshop “Developing the ERN ReCONNET Curriculum for Transition of Care in Rheumatology”, organised by the ERN ReCONNET Transition of Care Task Force and led by Tadej Avčin and Gabriele Simonini.

After yesterday’s deep dive into transition in paediatric rheumatology, today our participants are focusing on turning those insights into concrete outputs for the future ERN ReCONNET transition curriculum.

🛠️ Today’s sessions include:
• Design Sprint – Curriculum Development
• Implementation Pathways across different EU health systems
• Breakout discussions and report-back sessions
• Final synthesis and drafting of an EU Action Statement

Clinicians, researchers, ePAG advocates and experts from across Europe are working together to build a shared, multidisciplinary approach to support young people with rare and complex connective tissue diseases as they move from paediatric to adult care.

Here are some photos from today’s collaborative sessions!

13/11/2025

🎓 Register now for the next ERN RECONNET webinar “Everything you always wanted to know about Ehlers-Danlos Syndromes (EDS) – Part two”.
It will take place on the 19th of Nov 2025, at 16 CET

✍️ Register now at this link: rb.gy/rdxrlv

The speaker for this webinar will be Dr. Marco Castori, moderated by the ePAGs Charissa Franck and Eva Collado.

💡 This webinar is dedicated to Ehlers-Danlos Syndromes (EDS)
🎯 The target audience will be patients, caregivers, and family members.

⚙️ ERN ReCONNET resources on EDS are freely available and can be consulted here: https://reconnet.ern-net.eu/disease-eds/

🗞 Newsletter subscription: https://bit.ly/48dO86Q
💻 All webinars can be seen here: https://reconnet.ern-net.eu/webinar/

13/11/2025

🌍 Today in Ljubljana: ERN ReCONNET Transition Training Workshop!

The workshop “Developing the ERN ReCONNET Curriculum for Transition of Care in Rheumatology” is taking place today and tomorrow, 13-14 November 2025, in Ljubljana, Slovenia. The course is organised by the ERN ReCONNET Transition of Care Task Force, led by Tadej Avcin and Gabriele Simonini.

This two-day meeting brings together clinicians, researchers, patients, and experts from across Europe to design a shared curriculum for improving the transition of care of people living with rare and complex connective tissue diseases from pediatric to adult age.

Here are a few photos from today’s sessions, which include discussions on:
🧩 Transition in pediatric rheumatology
🎓 Core competencies in training
🛠️ Training methods and assessment

12/11/2025

🎓 Don’t miss our webinar TODAY at 16 CET on “Autoantibodies and clinical phenotypes in Idiopathic Inflammatory Myopathies (IIMs)” with Prof. Albert Selva O’Callaghan, moderated by Prof. Patricia E Carreira.

✍️Make sure you're registered at this link: rb.gy/v3v1y0
💡 This webinar is dedicated to Idiopathic Inflammatory Myopathies (IIMs).
🎯 The Target audience will be healthcare professionals, patients, caregivers, and family members.

⚙️ ERN ReCONNET resources on IIM are freely available and can be consulted here: https://reconnet.ern-net.eu/disease-iim/

🗞 Newsletter subscription: https://bit.ly/Sub_NewsReCONNET
💻 All webinars can be seen here: https://reconnet.ern-net.eu/webinar/

12/11/2025

🌍 Support the European Reference Networks (ERNs)!

The European Commission’s draft EU Budget 2028–2034 proposes major changes — including the integration of the EU4Health programme into the new European Competitiveness Fund (ECF).

❗️However, European Reference Networks (ERNs) and rare diseases are not explicitly mentioned in this proposal.
This is a crucial moment to make our voices heard and ensure continued EU support for the ERNs — a lifeline for millions of people living with rare and complex diseases across Europe.

📢 We invite you to take part in the public consultation and ask the European Commission to include ERNs in the next EU budget.

✅ How to take action:
Go to 👉 https://bit.ly/EUBudgetFeedback
Click “Give feedback”, add your text mentioning the ERNs and submit your feedback.

🗓️ Deadline: Today, 12 November 2025 (midnight Brussels time)

Together, we can make a difference for rare disease patients across Europe 💪💙

European Commission - Have your say

11/11/2025

📣 REGISTRATION OPEN!

Don't miss the 🆕 'Sharing Good Practice Initiative 2025'!

We are proud to announce the 3rd edition of our must-attend scientific event for sharing best practices and stimulating results.

Mark your calendars! 🗓️

Event Details 2025:
• 📅 Date: Monday, 1st December
• ⏰ Time: 15:00 - 17:00 CET
• 💻 Format: Online Event

➡️ REGISTER HERE: https://bit.ly/4hX6lZG

The registrations of the previous editions are available at the following links:
• 2024 Edition: https://youtu.be/3irfo_UV7bc
• 2023 Edition: https://youtu.be/8Kiylz8VpNU

You are all invited to participate in this high-profile event, which is essential for the scientific community, including professionals, patients, and their associations.

Further details about the scientific program will be shared soon.