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ERN RECONNET

ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases.

ERN ReCONNET is a European Reference Network (ERN) approved by the ERN Board of Member States. The ERNs are supported by the European Commission. For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern. The content on this page represents the views of the network and is its sole responsibility; it can in no way be taken to reflect the views of the European Commission or any other body of the European Union.

04/04/2026

🧡 Today, ERN ReCONNET proudly joins the IgG4-Related Disease (IgG4-RD) Awareness Day! 🧬

Did you know it can take up to 10 years to be diagnosed with IgG4-Related Disease?

IgG4-RD is a rare systemic fibroinflammatory condition that can affect more than 12 organs — including the pancreas, kidneys, salivary glands, orbits, and lungs. Its symptoms develop gradually and are frequently mistaken for other conditions, making awareness among patients and healthcare professionals more important than ever.

🌍 ERN ReCONNET covers various rare connective tissue diseases, including IgG4-RD.
The ERN ReCONNET IgG4-RD Disease Group is co-led by:
* Tobias Alexander (Disease Coordinator)
* Emanuel Della Torre (Disease Coordinator)
* Jose Ballarin Castan (ePAG representative)
* Alexander Patsalias (ePAG representative)

Together with clinicians and patient advocates across Europe, this dedicated group is working to close the diagnostic gap and ensure every patient gets the care they deserve sooner.

Explore IgG4-RD Resources:
🔬 All IgG4-RD resources & expert centres: https://reconnet.ern-net.eu/disease-igg4/

🎥 Watch all our webinars: https://www.youtube.com/

💡 Subscribe to our newsletter: bit.ly/44wk7La

💬 Share this post and make the world more aware of this rare disease

01/04/2026

🎓 ERN ReCONNET Webinar TODAY | IgG4-related disease (IgG4-RDs)

Don’t miss our webinar TODAY at 16 CET:
“Update on B cell targeting therapies in IgG4-related disease"

Event Details:
• Date: TODAY, 1st April 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals
• Dedicated to: IgG4-related disease (IgG4-RDs)
• ✍️ Registration: rb.gy/senvan

🎤 Speaker: Dr. Marco Lanzillotta
🎙 Moderator: Prof. Emanuel Della Torre

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

⚙️ ERN ReCONNET resources on IgG4-RD 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/

26/03/2026

A day of immense value for European healthcare has just concluded in Brussels, dedicated to building a system that is fairer, more connected, and closer to its citizens. 🇪🇺💙

The High Level Conference delivered a powerful message: cross-border cooperation is the only way to guarantee the right to health, especially for those living with rare and complex diseases.

Key takeaways from the meeting:
🔹 Beyond Borders: It is essential to fully implement EU Directive 2011/24/EU, facilitating cross-border healthcare through bilateral agreements and clearer, more effective reimbursement mechanisms between Member States.
🔹 Practical Innovation: Telemedicine, integrated patient care pathways, and investments in the training of healthcare professionals are the vital tools for a sustainable system.
🔹 The Power of Networks: The European Reference Networks (ERNs) are at the heart of this transformation. Their impact stems from the close collaboration between professionals, institutions, and—most importantly—the fundamental contribution of patients and patient associations, who are key actors at every level of the network.

Looking ahead, a central role is entrusted to the Joint Action JARDIN, which is dedicated to integrating these networks into national healthcare systems and ensuring a harmonized approach across Europe.

A particularly significant moment was the intervention by Donata Meroni (European Commission, DG SANTE) on ERN success stories, providing tangible evidence of the networks' real-world impact. This was preceded by an introduction from Marta Mosca (Head of Rheumatology at AOU Pisana and Coordinator of ERN ReCONNET), who presented our Network’s Red Flags methodology: a concrete example of how collaboration and shared innovation translate into effective tools for improving rare disease patient care.

We leave this meeting with a clear awareness: transforming ideas into real solutions requires infrastructure, access to funding, and constant commitment. The challenge is complex, but together, it is possible. ✨

26/03/2026

🎓 ERN ReCONNET Webinar | IgG4-related disease (IgG4-RDs)

We are pleased to announce the upcoming ERN ReCONNET webinar:
“Update on B cell targeting therapies in IgG4-related disease”

What role do B cells play in the development of IgG4-related disease (IgG4-RD)? What are the emerging therapeutic options for this relapsing–remitting condition? This webinar explores the key mechanisms underlying IgG4-RD, emphasising the role of B cells in driving immune activation and fibrosis. urrent treatment strategies will be reviewed, from rituximab to the latest evidence on inebilizumab, an anti-CD19 antibody recently approved by the EMA, alongside insights into ongoing clinical research.

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

Event Details:
- Date: 1st April 2026
- Time: 16:00 CET
- Target Audience: healthcare professionals
- Dedicated to: IgG4-related disease (IgG4-RDs)
-✍️ Registration: rb.gy/senvan

🎤 Speaker: Dr. Marco Lanzillotta
🎙 Moderator: Prof. Emanuel Della Torre

⚙️ ERN ReCONNET IgG4-RD Resources: https://reconnet.ern-net.eu/disease-igg4/
🗞 Newsletter subscription: bit.ly/44wk7La
💻 Webinar Archive: https://reconnet.ern-net.eu/webinar/

25/03/2026

🎓 ERN ReCONNET Webinar TODAY | Sjögren´s Disease (SjD)

Don’t miss our webinar TODAY at 16 CET:
“Pregnancy in women with primary Sjögren´s disease”

Event Details:
• Date: TODAY, 25th March 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals, patients, caregivers, and family members
• Dedicated to: Sjögren´s Disease (SjD)
• ✍️ Registration: rb.gy/5u11hl

🎤 Speaker: Dr. Grégoire Martin de Frémont
🎙 Moderators: Prof. Chiara Baldini and the ePAG representative Coralie Bouillot.

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

⚙️ 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/

19/03/2026

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

We are pleased to announce the upcoming ERN ReCONNET webinar:
“Pregnancy in women with primary Sjögren´s disease”

How can pregnancy be managed safely for women with primary Sjögren’s Disease, and what are the main risks for both mother and baby? This webinar provides an in-depth overview of the entire journey, from preconception to the postpartum period. It highlights practical strategies for counselling, medication management, and disease control. Particular attention is given to congenital heart block associated with anti-Ro/SSA antibodies. It explores the mechanisms and risk factors of this condition, as well as current approaches to prevention and treatment, alongside insights into long-term outcomes.

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

Event Details:
• Date: 25th March 2026
• Time: 16:00 CET
• Target Audience: healthcare professionals, patients, caregivers and family members
• Dedicated to: Sjögren´s Disease (SjD)
•✍️ Registration: rb.gy/5u11hl

🎤 Speaker: Dr. Grégoire Martin de Frémont
🎙 Moderators: Prof. Chiara Baldini and the ePAG representative Coralie Peter Bouillot

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

18/03/2026

🎓 ERN ReCONNET Webinar TODAY | Idiopathic Inflammatory Myopathies (IIMs)

Don’t miss our webinar TODAY at 16 CET:
“Recent advances in the treatment of inflammatory myopathies”

Event Details:
• Date: TODAY, 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
👉 Please note that the webinar is available with subtitles in 36 different languages.

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

17/03/2026

🌍 Did you know? You have the right to access healthcare anywhere in the EU — but many citizens are still unaware of it.

Join the conversation at the High-Level Conference
“Patients’ rights on cross-border healthcare and the European Reference Networks”
📅 26 March

This important event will bring together experts, policymakers, and representatives from all 24 European Reference Networks to explore how we can make cross-border healthcare more accessible, visible, and effective for patients across Europe.

💡 Key topics include:
✔️ Patients’ rights in cross-border healthcare
✔️ Healthcare access in border regions
✔️ The role of ERNs in rare diseases

Building on insights from 12 national workshops held across Europe, this conference is a key step toward improving awareness and real-world access to healthcare beyond borders.

🔗 Want to learn more or take part?
Find all the details and register here: https://bit.ly/HLC_PatientsRights_ERNs

Commission

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/

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