ERN RECONNET

11/02/2026

🎓 ERN ReCONNET Webinar | Systemic Sclerosis (SSc)

We are pleased to announce the upcoming ERN ReCONNET webinar “The role of exercise as a non-pharmacological treatment adjunct to pharmacotherapy in people with systemic sclerosis”.

How can exercise improve the lives of those living with systemic sclerosis, and is it safe for patients with complex vascular and fibrotic symptoms? This webinar provides a comprehensive overview of the latest clinical evidence regarding exercise interventions, specifically designed for healthcare professionals.

👉 Please note that the webinar is available with subtitles in 36 different languages.

Event Details:
• Date: 18th February 2026
• Time: 16:00 CET
• Target Audience: Healthcare professionals
• Dedicated to: Systemic Sclerosis (SSc)
• ✍️ Registration: rb.gy/t4u9p8

The speaker will be Dr. Alexandros Mitropoulos.
The session will be moderated by Prof. Vanessa Smith.

⚙️ ERN ReCONNET SSc Resources: https://reconnet.ern-net.eu/disease-ssc/
🗞 Newsletter subscription: bit.ly/44wk7La
💻 Webinar Archive: https://reconnet.ern-net.eu/webinar/

11/02/2026

🎓 Don’t miss our webinar TODAY at 16 CET on “The Path to Better Treatments: A Patient-Friendly Guide to Sjögren’s Clinical Trials” with Prof. Isabelle Peene, moderated by Prof. Gaetane Nocturne, and the ePAG representative, Mrs. Coralie Peter Bouillot, who is standing in for Mrs. Ana Vieira.

✍️Make sure you're registered at this link: rb.gy/t4u9p8
💡This webinar is dedicated to Sjögren's disease (SjD).
🎯The Target audience will be patients, caregivers, and family members.

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

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

05/02/2026

📅 The ERN ReCONNET 2026 Webinar Calendar is now live!

A full year of free, high-quality webinars dedicated to rare and low-prevalence connective tissue and musculoskeletal diseases is ready to begin.

From disease-specific topics to transversal themes, the 2026 programme brings together international experts, healthcare professionals, patients, and caregivers in an interactive learning space where patient partnership remains central.

🌍 To further enhance accessibility and inclusiveness, all live webinars feature real-time subtitles in 36 different languages, allowing participants from across Europe and beyond to follow the sessions more easily.

🎥 Discover the programme in the video launch by Prof. Maurizio Cutolo: https://bit.ly/Webinar2026MC

🆓 Registration is free and open to everyone
▶️ All webinars will also be available on our YouTube channel

👉 Explore the calendar and register now: https://bit.ly/ERN_webinar
👉 Share it with colleagues and communities who may benefit

03/02/2026

🎓 ERN ReCONNET Webinar | Sjögren’s Disease (SjD)

We are pleased to announce the upcoming ERN RECONNET webinar “The Path to Better Treatments: A Patient-Friendly Guide to Sjögren’s Clinical Trials”.

How are new treatments for Sjögren's disease developed, and what does it really mean to participate in clinical research? This webinar provides an accessible and reliable overview of the clinical trial landscape, specifically designed for patients, carers, and family members.

Event Details:
• Date: 11th February 2026
• Time: 16:00 CET
• Target Audience: Patients, caregivers, and healthcare advocates
• Dedicated to: Sjögren’s Disease (SjD)
•✍️ Registration: rb.gy/t4u9p8

The speaker will be Prof. Isabelle Peene.
The session will be moderated by Prof. Gaetane Nocturne and the ePAG representative, Mrs. Ana Vieira.

⚙️ ERN ReCONNET SjD Resources: https://reconnet.ern-net.eu/disease-ss/
🗞 Newsletter subscription: bit.ly/44wk7La
💻 Webinar Archive: https://reconnet.ern-net.eu/webinar/

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