ERN RECONNET

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.

07/11/2025

🎓 Register now for the next ERN RECONNET webinar “Autoantibodies and clinical phenotypes in Idiopathic Inflammatory Myopathies (IIMs)”.
It will take place on the 12th of Nov 2025, at 16 CET

✍️ Register now at this link: rb.gy/v3v1y0

The speaker for this webinar will be Prof. Albert Selva O’Callaghan, moderated by Prof. Patricia E Carreira.

💡 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/

05/11/2025

🎓 Don’t miss our webinar TODAY at 16 CET on “Vaccination in Undifferentiated Connective Tissue Disease (UCTD)” with Prof. Patricia E. Carreira, moderated by Prof. Luca Iaccarino and Prof. Cristina Pamfil.

✍️Make sure you're registered at this link: rb.gy/8ox7ny

💡 This webinar is dedicated to Undifferentiated Connective Tissue Diseases (UCTD).
🎯 The Target audience will be healthcare professionals, patients, caregivers, and family members.

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


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

22/10/2025

🎓 Register now for the next ERN RECONNET webinar “Vaccination in Undifferentiated Connective Tissue Disease (UCTD)”.
It will take place on the 05th of Nov 2025, at 16 CET

✍️ Register now at this link: rb.gy/8ox7ny

The speaker for this webinar will be Prof. Patricia E. Carreira, moderated by Prof. Luca Iaccarino and Prof. Cristina Pamfil.

💡 This webinar is dedicated to Undifferentiated Connective Tissue Diseases (UCTD).
🎯 The target audience will be healthcare professionals, patients, caregivers, and family members.

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

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

17/10/2025

📢 ERN ReCONNET Transition Survey: Your Experience Can Help Many! 📢

To all patients with rare connective tissue diseases (rCTDs) and their carers!

The European Reference Network ( ERN ReCONNET ) is working to make the delicate transition from paediatric to adult healthcare for rCTDs across Europe easier and more supportive.

💬 This is a VALUABLE OPPORTUNITY to share your experiences, challenges and needs at this critical stage!

Why is your contribution essential?

Your feedback is more than just data; it will contribute to the development of a better, more effective transitional care model for people living with rCTDs in Europe. Our goal is to make this transition as smooth as possible for everyone.

🌍 The survey is available in 20 European languages!

⏱️ It only takes 15 minutes to complete, and you can pause and resume it later.

Let's work together to improve the quality of care for rare diseases.

👉 Take the survey now and make a difference!
Click here for the link in your native language and make your voice heard today!
• Croatian: https://bit.ly/ERNTr_HR
• Czech: https://bit.ly/ERNTr_CZ
• Dutch: https://bit.ly/ERNTr_NL
• English: https://bit.ly/ERNTr_EN
• Estonian: https://bit.ly/ERNTr_ET
• Finnish: https://bit.ly/ERNTr_FI
• French: https://bit.ly/ERNTr_FR
• German: http://bit.ly/ERNTr_DE
• Greek: https://bit.ly/ERNTr_EL
• Hungarian: https://bit.ly/ERNTr_HU
• Italian: https://bit.ly/ERNTr_IT
• Latvian: https://bit.ly/ERNTr_LV
• Maltese: https://bit.ly/ERNTr_MT
• Polish: https://bit.ly/ERNTr_PL
• Portuguese: https://bit.ly/ERNTr_PT
• Romanian: https://bit.ly/ERNTr_RO
• Slovenian: https://bit.ly/ERNTr_SL
• Slovakian: https://bit.ly/ERNTr_SK
• Spanish: https://bit.ly/ERNTr_ES
• Swedish: https://bit.ly/ERNTr_SV
• Swedish: https://bit.ly/ERNTr_SV

15/10/2025

🎓 Don’t miss our webinar TODAY at 16 CEST on “Unconventional therapies in connective tissue diseases” with the ePAGs Mrs Magdalena Ciupera and Mrs Vera Guimarães.

✍️Make sure you're registered at this link: rb.gy/d5daf2
💡 This webinar is dedicated to rare and complex connective tissue diseases (rCTDs).
🎯 The Target audience will be healthcare professionals, patients, caregivers, and family members.

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

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

09/10/2025

🎓 Register now for the next ERN RECONNET webinar “Unconventional therapies in connective tissue diseases”.
It will take place on the 15th of Oct 2025, at 16 CEST

✍️ Register now at this link: rb.gy/d5daf2

The speakers for this webinar will be the ePAGs Mrs Magdalena Ciupera and Mrs Vera Guimarães.

💡 This webinar is dedicated to rare and complex connective tissue diseases (rCTDs).
🎯 The target audience will be healthcare professionals, patients, caregivers, and family members.

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

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