ERN RECONNET

19/12/2025

📢 The new ERN ReCONNET Newsletter is out!

Our December 2025 edition is now available and brings together:
✔️ A special message to the ERN ReCONNET community
✔️ Highlights from all Disease Groups and Working Groups
✔️ Key achievements and activities carried out across the network in 2025

Discover how collaboration, expertise, and patient partnership continued to shape ERN ReCONNET throughout the year.

👉 Read the newsletter here:

European Commission

We are happy to share the latest ERN ReCONNET newsletter (December 2025 edition) with our community! This issue looks back at a very active year for the network and brings together updates, achievements, and perspectives from across ERN ReCONNET. The newsletter also features a special message to the...

17/12/2025

We are pleased to be featured in the JARDIN Joint Action Advent Calendar!
We thank the Jardin Joint Action for highlighting the role of ERN ReCONNET in supporting high-quality, cross-border care for people living with rare diseases across Europe.

Learn more about ERN ReCONNET: https://reconnet.ern-net.eu

European Commission

12/12/2025

This week in Brussels, during the High-Level Meeting on a European Research and Innovation Ecosystem for Rare Diseases, our Network Coordinator, Prof. Marta Mosca, signed the Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases at the European Parliament.

The High-Level Meeting was organised by Maurizio Scarpa and Vytenis Andriukaitis and brought together EU policymakers, healthcare professionals, researchers, patient advocates, industry leaders and other key stakeholders to shape a shared vision for rare disease care across Europe.

The Declaration was developed during the meeting as a strategic commitment to transform how rare and complex diseases are addressed in Europe, outlining shared priorities, actions and a roadmap towards better diagnosis, care, innovation and access to treatments.

By signing on b ET, Prof. Mosca highlighted our network’s commitment to rare and complex diseases, through stronger collaboration, patient-centred solutions and a more coordinated European ecosystem.

Read the Declaration and found out more about the High Level Meeting at this link: https://www.brains4brain.eu/eu-activities-polices/hlm-rare/

11/12/2025

Today our coordination team is in Brussels at the European Parliament for the closing day of the High-Level Meeting on Rare Diseases (9–11 December). After two days of discussions hosted in other institutional venues, today’s session at the Parliament represents a key moment to bring the voice of rare diseases and European Reference Networks directly into the EU policy arena.

This three-day meeting gathered ERNs, European institutions, researchers, and community representatives to strengthen research and innovation in rare diseases and to highlight the essential role that ERNs play in this ecosystem.

ERN ReCONNET is represented by:
• Prof. Marta Mosca, ERN ReCONNET Coordinator
• Dr. Rosaria Talarico, Scientific Coordinator
• Dr. Diana Marinello, Network Manager

Prof. Mosca contributed to the dedicated session on developing specialised skills and formalising the ERN Academy, emphasising the importance of a shared European framework for advanced training in rare diseases.

A key moment of the meeting was the presentation of the European Declaration on Rare Diseases, calling for renewed and coordinated action to enhance research, innovation, and access to expertise for people living with rare conditions.

More info:https://bit.ly/HLM_RD_2025

10/12/2025

🎓 Don’t miss our webinar TODAY at 16 CET on “IgG4-related disease (IgG4-RD): update on diagnosis and treatments in 2025” with Prof. Nicolas Schleinitz, moderated by Prof. Eric Hachulla.

✍️Make sure you're registered at this link: rb.gy/l91vdm

💡 This webinar is dedicated to IgG4-related disease (IgG4-RD).
🎯 The Target audience will be patients, healthcare professionals, caregivers, and family members.

⚙️ ERN ReCONNET resources on IgG4 are freely available and can be consulted here: https://reconnet.ern-net.eu/disease-igg4/

🗞 Newsletter subscription: https://bit.ly/48dO86Q

💻 All webinars can be seen here: https://reconnet.ern-net.eu/webinar/

04/12/2025

📢 Help Us Strengthen Care for People Living with Systemic Sclerosis (SSc)!

ERN ReCONNET has launched a new EU-wide survey on the assessment and self-management of digital lesions—including digital ulcers—in people living with systemic sclerosis (SSc), and we need your voice.

✨ Why Your Participation Matters
Your insights will help shape future recommendations, promote best practices, and drive collaboration within the SSc community. Every response makes a real difference.

👥 Who Can Take Part?
The survey is open to people living with systemic sclerosis.

🌍 Available in 9 Languages
Danish, Dutch, English, French, Italian, Latvian, Portuguese, Romanian and Spanish.

🔗 Take the Survey in Your Language:
1️⃣ Danish: https://bit.ly/SScDanish
2️⃣ Dutch: https://bit.ly/SScDutch
3️⃣ English: https://bit.ly/SScEnglish
4️⃣ French: https://bit.ly/SScFrench
5️⃣ Italian: https://bit.ly/SScItalian
6️⃣ Latvian: https://bit.ly/SScLatvian
7️⃣ Portuguese: https://bit.ly/SScPortuguese
8️⃣ Romanian: https://bit.ly/SSc_Romanian
9️⃣ Spanish: https://bit.ly/SScSpanish

⏰ Deadline: 15 January 2026
We warmly encourage patients, caregivers, clinicians, and patient organisations to spread the word and support this initiative.

More information on our website: https://bit.ly/48cJPsy

Your experience matters—please take part and help us advance care for the SSc community.

03/12/2025

Did you miss the third edition of the 'ERN ReCONNET Sharing Good Practice' initiative?

Watch it now! 🎬

➡️ https://youtu.be/8ko8sBwDm9U

Promoted by ERN ReCONNET, this online event provided a valuable opportunity for highly specialised centres to share the good practices they have successfully implemented.

Event Focus:
• CPMS Implementation 💻
• Advanced Diagnostic and Methodological Approaches
• AI Innovations like LupusGPT 🤖
• The crucial importance of Effective Communication and Personalized Integrative Care.

The event was moderated by Dr. Rosaria Talarico and the ePAG advocate Ilaria Galetti, chairs of the Research and Quality of Care Working Group.

Watch the full video now and discover the best practices that are redefining Rare Disease care!

⚙️ rCTDs resources, info, and links: https://reconnet.ern-net.eu/disease-info/
📰 Subscribe to our newsletter: bit.ly/44wk7La
🌐 More info on ERN ReCONNET: https://reconnet.ern-net.eu/

03/12/2025

🎓 Don’t miss our webinar TODAY at 16 CET on “Quality of life in Relapsing Polychondritis (RP)” with Prof. Laurent Arnaud and Dr. Philippe Mertz, moderated by the ePAGs Lisa Matthews and Camelia Bucsa.

✍️Make sure you're registered at this link: rb.gy/kh6tmw

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

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!