ERN RECONNET

16/01/2026

📍 Advancing expertise and collaboration in rare connective tissue diseases

Ghent University Hospital (Prof. Vanessa Smith, Dr. Yves Piette, Prof. Isabelle Peene and colleagues) recently organised a three-day immersion preceptorship dedicated to rare connective tissue diseases and the Clinical Patient Management System (CPMS).

During this intensive programme, in between others, Dr. Da Silva Domingues, Coordinator of CHL Luxembourg, was introduced to the practical use of CPMS for cross-border virtual consultations within the ERNs.

The preceptorship also highlighted the importance of multidisciplinary collaboration, with close liaison with ERN Lung to showcase joint evaluation and management of interstitial lung disease in rare connective tissue diseases.

👏 A great example of hands-on training, knowledge exchange, and ERN collaboration to strengthen patient care across Europe.

Learn more about the CPMS at this link: https://bit.ly/ERN_CPMS



Learn more about the CPMS at this link: https://bit.ly/ERN_CPMS

08/01/2026

📢 ERN eUROGEN, ERNICA, European Rare Kidney Disease Reference Network, ERN GUARD-Heart, & DeCODe invite you to a joint ERN webinar:

🛠️ Medical Device Shortages & Regulatory Constraints
🗓 Wednesday 21 January | ⏰ 18:00–19:30 CET

👉 Register now: https://bit.ly/eUROGEN21Jan26

This unique session brings together clinicians, regulators, and industry leaders to examine how EU device shortages and regulatory complexity are affecting real-world care – and what must change.

🎙 Speakers include:
- Yazan Rawashdeh
- Johan Vande Walle
- Elena Arbelo
- Thomas Krasemann
- Marc Gewillig
- Tom Melvin
- Anneliene Jonker
- Andreas Kohl

Commission Jardin Joint Action

08/01/2026

Looking ahead to 2026, ERN ReCONNET has endorsed new key events that will bring together the European rare disease community to share expertise and advance patient care.

📅 ERN ReCONNET Endorsed Events 2026 – First Announcements:

• 39th French Systemic Scleroderma Workshops
4–5 February 2026 | Lille, France

• ComplementRarity – 2nd Edition: Evolution in Therapy
6–7 February 2026 | Rome, Italy

• ReumaLiguria 2026 – 2nd Regional Advanced Meeting
28 February 2026 | Genoa, Italy

• CeRAINOM Exchange Day
9 April 2026 | Lille, France

Read more about these events on our website: https://bit.ly/45GvHG8

More endorsed events will be announced in the coming months. Stay connected with ERN ReCONNET for updates and opportunities to engage with the European rare disease community.

07/01/2026

📣 Register now for ECRD 2026! 📣

The registration for the European Conference on Rare Diseases & Orphan Drugs (ECRD 2026) is officially open! 🗓️

🌍 ECRD is a leading event dedicated to the rare disease community, bringing together patients, clinicians, researchers, policymakers, and industry stakeholders to exchange knowledge and drive impact.

✨ Early-Bird Rates Available
Make sure you register before 26 February 2026 to take advantage of the exclusive Early-Bird rates and secure your place at this key event for the rare disease ecosystem.

🔗 Register for ECRD 2026 at this link: https://lnkd.in/dk8azGQ

🔗 The ECRD 2026 Programme is available here: https://lnkd.in/eRt85NW7

Don't miss the ECRD 2026 - a truly impactful event for the rare disease community! 💪

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/