ERN RECONNET

13/03/2026

⏰ Last call! Today is the final deadline to submit your poster abstract for .

Researchers, clinicians, patient groups, and public health experts working on rare diseases — don’t miss the opportunity to showcase your work and be part of the conference’s virtual poster exhibition, with the possibility to present your poster in Prague.

Submit your 300-word abstract before the end of the day 👇
https://go.eurordis.org/ecrd-posters-2026

12/03/2026

🎓 ERN ReCONNET Webinar | Idiopathic inflammatory myopathies (IIMs)

We are pleased to announce the upcoming ERN ReCONNET webinar:
“Recent advances in the treatment of inflammatory myopathies”

What are the most recent advances in the treatment of inflammatory myopathies, and how are they reshaping current management strategies? This webinar will provide an overview of the latest developments in both pharmacological and non-pharmacological approaches, highlighting ongoing research and future therapeutic perspectives. Participants will gain practical insights into how recent progress is transforming the treatment landscape for patients with inflammatory myopathies.

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

Event Details:
• Date: 18th March 2026
• Time: 16:00 CET
• Target Audience: Healthcare professionals, patients, and caregivers
• Dedicated to: Idiopathic inflammatory myopathies (IIMs)
•✍️ Registration: rb.gy/fvr9mp

🎤 Speaker: Prof. Alain Meyer
🎙 Moderator: Prof. Patricia E. Carreira

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

11/03/2026

🎓 ERN ReCONNET Webinar TODAY | Systemic Lupus Erythematosus (SLE)

Don’t miss our webinar TODAY at 16 CET:
“What is the added value of triple therapy in lupus nephritis?”

🤝🌐 The webinar will be a collaboration between ERN ReCONNET and ERKNet (European Rare Kidney Disease Reference Network).

Event Details:
• Date: TODAY, 11th March 2026
• Time: 16:00 CET
• Target Audience: Healthcare Professionals
• Dedicated to: Systemic Lupus Erythematosus (SLE)
• ✍️ Registration: rb.gy/wgqvkz

🎤 Guest Speaker: Prof. Antonis Fanouriakis
🎙 Guest Moderator: Prof. Dieter Haffner from ERKNet

The session will also be moderated by representatives of the ERN ReCONNET SLE Disease Group:
• Prof. Matthias Schneider
• Zoe Karakikla-Mitsakou, ePAG representative of the SLE Disease Group, Lupus Europe.

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

⚙️ ERN ReCONNET resources on SLE are freely available and can be consulted here: https://reconnet.ern-net.eu/disease-sle/
🗞 Newsletter subscription: https://bit.ly/48dO86Q
💻 All webinars can be seen here: https://reconnet.ern-net.eu/webinar/

03/03/2026

🎓 ERN ReCONNET Webinar | Systemic Lupus Erythematosus (SLE)

We are pleased to announce the upcoming ERN ReCONNET webinar:
“What is the added value of triple therapy in lupus nephritis?”

What is the role of triple immunosuppressive therapy in the management of lupus nephritis, and how does it improve renal outcomes compared to conventional treatment strategies? This webinar will provide a comprehensive overview of the latest clinical recommendations, offering practical insights for healthcare professionals involved in the care of patients with Systemic Lupus Erythematosus (SLE).

👉 The webinar will be a collaboration between ERN ReCONNET and ERKNet (European Rare Kidney Disease Reference Network).

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

Event Details:
• Date: 11th March 2026
• Time: 16:00 CET
• Target Audience: Healthcare professionals
• Dedicated to: Systemic Lupus Erythematosus (SLE)
• ✍️ Registration: rb.gy/wgqvkz

🎤 Speaker: Prof. Antonis Fanouriakis
🎙 Guest Moderator: Prof. Dieter Haffner from ERKNet

The session will also be moderated by representatives of the ERN ReCONNET SLE Disease Group:
• Prof. Matthias Schneider
• Zoe Karakikla-Mitsakou, ePAG representative of the SLE Disease Group, Lupus Europe.

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

02/03/2026

📣 ERN ReCONNET at the Transition in Rare Diseases Workshop

How can we make the move from paediatric to adult care smoother for people living with rare diseases? This was the key question at the Transition in Rare Diseases Workshop (27–28 February 2026, Ghent, Belgium), held in the context of .

ERN ReCONNET was proud to be part of this important multistakeholder event. Our representatives — Edoardo Marrani, Chiara Baldini and@cobouillot — worked alongside colleagues from across the European Reference Networks, including young patient representatives from the ERN Youth Panel.

💬 Together, participants:
• exchanged best practices
• explored common challenges
• contributed to shaping European minimal criteria for effective transition care

The strong focus on co-creation and patient voices highlighted a shared commitment: ensuring that no young person with a rare disease is left behind during the transition to adult care.

🤝 ERN ReCONNET continues its commitment to strengthening collaboration across ERNs and advancing more patient-centred, equitable transition pathways across Europe.

Commission

28/02/2026

Today, 28 February, we are proud to share these powerful images of the Leaning Tower of Pisa, illuminated by ERN ReCONNET on the occasion of Rare Disease Day 💜✨

Against the night sky, the tower becomes more than a monument 🏛️. Its iconic tilt tells a story of resilience, balance, and the strength that comes from solid foundations and mutual support. It reminds us that even what seems fragile can stand firm—when it is supported 🤝.

By lighting up one of Europe’s most iconic landmarks, ERN ReCONNET shares a visible message of unity and commitment. This is the same spirit that guides ERN ReCONNET and all the 24 European Reference Networks across Europe 🌍, working side by side with patients, clinicians, researchers, and policymakers to improve diagnosis, care, and quality of life for people living with rare and complex conditions 🧬.

Rare diseases may affect a small number of people individually, but together they touch millions of lives 💫. Behind every diagnosis there is a person, a family, a story of challenges—and of courage ❤️.

Days like today remind us why collaboration matters, why sharing expertise across borders is essential, and why listening to patients’ voices must always be at the heart of what we do.

As the Leaning Tower stands illuminated 🌟, it sends a clear message: strength is collective. On Rare Disease Day, we stand united—across countries, disciplines, and communities ✨🤍.

European Commission

28/02/2026

📢 Rare Disease Day – New Communication Package from DG SANTE

On the occasion of Rare Disease Day, DG SANTE has prepared a comprehensive communication package to support awareness and engagement around rare diseases and the European Reference Networks (ERNs).

🗓 The materials are available on the DG SANTE Rare Diseases and ERNs webpage:
🔗 https://bit.ly/40CfVJr
➡️ Please check the “Latest Updates” and “Highlights” sections.

📚 The package includes:
• ERNs brochure 2026 – European Reference Networks. Working with patients with rare and low-prevalence and complex diseases - available via the Publications Office of the European Union: https://op.europa.eu/s/AdMA
• ERNs booklet 2025 – A success story for patients living with a rare disease (EN/DE/EL/FR/IT)
• Rare disease factsheet 2026 – How the European Commission works on Rare Diseases and the ERNs
• Rare disease factsheet 2026 – EU delivering on rare diseases for patients and families

📰 Additionally, a dedicated article will be featured in the SANTE Newsletter:
“Rare Diseases are not rare – nor are rare disease success stories!”

Let’s continue working together to improve the lives of people living with rare and complex conditions.

Rare diseases and European Reference Networks

28/02/2026

📢 🦓 On Rare Disease Day, we join the Jardin Joint Action in amplifying the voices of people living with rare and complex conditions, and highlighting the role of the European Reference Networks (hashtag ).

🧩🌟 Today, we share Coralie Peter Bouillot’s story.

After years of unexplained symptoms and not being heard, Coralie was finally diagnosed with Sjögren’s disease following a severe flare-up. Her journey reflects the challenges many patients face on the road to diagnosis.

👐 Now monitored at an ERN ReCONNET reference centre, Coralie has full confidence in the specialised team supporting her and in the power of international collaboration.

🙏 Thank you, Coralie, for sharing your experience and helping raise awareness of rare and complex connective tissue and musculoskeletal diseases.

👉 Read her full story shared by JARDIN: https://lnkd.in/e9YvpUAR

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28/02/2026

🌍 Today ERN ReCONNET proudly joins the global Rare Disease Day 2026.

ERN ReCONNET is a network of 63 healthcare providers and patient advocates working together with one clear mission: to improve the management of rare connective tissue and musculoskeletal diseases (rCTDs) across the EU.

✨ As we do each year, we are lighting up the Tower of Pisa to raise awareness of rare and complex connective tissue and musculoskeletal diseases. Stay tuned — this year’s photos of the illuminated tower will be shared later this afternoon!

🔎 Why it matters
Rare diseases affect 5% of the global population — over 300 million people worldwide. Yet access to diagnosis, care, and treatment still depends heavily on where people live. Achieving equity in rare diseases means recognizing these gaps and investing where the need is greatest.

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

27/02/2026

📢 🦓 Throughout Rare Disease Month, the JARDIN Joint Action has been highlighting patient stories from across the ERNs, showing the real-life impact of rare and complex conditions.

🧩🌟 We are pleased to share Lotta’s story.

At the age of 52, Lotta was diagnosed with Relapsing Polychondritis, a rare autoimmune disease affecting cartilage, joints and other organs. Although the condition has significantly changed her daily life, Lotta continues to focus on what she can still enjoy and values the support she has found within the rare disease community worldwide.

🙏 Thank you, Lotta, for sharing your journey and helping increase awareness of rare and complex connective tissue and musculoskeletal diseases.

👉 Read her full story shared by JARDIN: https://lnkd.in/etY8EUhN

26/02/2026

📢 🦓 The Jardin Joint Action joined the Rare Disease month, collecting the stories of people living with a rare disease or complex condition, their families and caregivers, and how the European Reference Networks (hashtag ) support them.

🧩🌟 Today, we share the story of our ERN ReCONNET ePAG Advocate, Olga.

After her first symptoms in 2013, Olga faced a long and complex journey to diagnosis. Today, with specialised care and a strong partnership with her rheumatologist, she continues to move forward with strength and hope.

🙏 We warmly thank Olga for sharing her story and helping raise awareness of rare and complex connective tissue and musculoskeletal diseases.

👉 Read her full story shared by JARDIN: https://lnkd.in/eZu23p9s

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