ERN-Skin

08/01/2026

ERDERA: Exploring RD Researchers' Needs for Consultancy Services survey

Erdera has opened its community survey and they are calling on everyone involved in rare disease research to help identify where expert consultancy can make the biggest difference.

Whether it’s ethics and regulatory alignment, data readiness, PPIE, IP and innovation, or study start-up… your input is valuable!

By sharing your practical insights, you’ll help them design targeted, sustainable support services that make research smoother, stronger and faster across Europe and beyond. 🌍

🔗 More info: https://loom.ly/IbXYIfw

📝 Access the survey: https://loom.ly/4PY2_TY

🔄 Share this with your network to help gather diverse perspectives and strengthen the evidence base.

Dear Respondent,  We are contacting you in the framework of the European Rare Disease Research Alliance (ERDERA), the new European Partnership on Rare Diseases launched in September 2024 to improve the health and well-being of the 30 million people living in Europe with a rare disease by advanc...

07/01/2026

📣 2 Days left !

You still have some time to register and join the First DEGOS disease workshop on January 9th from 3:00 pm to 6:00 pm CET

🩺💻 First DEGOS disease workshop (Malignant atrohic papulosis): An ultra-rare disease that must be recognized

Are you a healthcare professional or researcher working in rare diseases?

We invite you to the first Degos Workshop taking place on January 9 from 15:00 to 18:00 CET, as a virtual event 🌐.

Participation is free of charge but registration is mandatory.

👉 Register now: https://ern-skin.eu/ern-skin-meetings/

Please feel free to share this invitation within your professional networks

Fimarad - Filière Santé Maladies Rares Dermatologiques Filière des maladies Auto Immunes et Auto Inflammatoires Rares FAI²R Société Française de Dermatologie Société Nationale Française de Médecine Interne Société Française de Rhumatologie (SFR) SOFREMIP

02/01/2026

🎯 Fondation René Touraine new challenge!

Did you know that our partner Fondation René Touraine - International Foundation for Dermatology has a new challenge; to publish a book compiling the drawings of the participants to their art contest over the last 10 years.

🎨 Since 2015, the international competition “The Story of My Skin” has invited young participants worldwide to express what their skin means to them: difference, imagination, light, fragility, strength, or curiosity.

Their drawings form a unique collection - sensitive, poetic, and sometimes unexpected.

This book is more than a collection of drawings - it is an act of pride.

For many participants, seeing their artwork published in a real book is a way:

- to rebuild confidence,
- to feel valued,
- to show the world their creativity rather than their condition.

In order to carry out this project, a crowdfunding on Kickstarter platform has been launched. Help meet this challenge!

🔗 https://www.kickstarter.com/projects/fondrt/ma-peau-raconte-le-livre

Quand les enfants transforment leur maladie en art.

31/12/2025

🩺💻 First DEGOS disease workshop (Malignant atrohic papulosis): An ultra-rare disease that must be recognized

Are you a healthcare professional or researcher working in rare diseases?

We invite you to the first Degos Workshop taking place on January 9 from 15:00 to 18:00 CET, as a virtual event 🌐.

Participation is free of charge but registration is mandatory.

👉 Register now: https://ern-skin.eu/ern-skin-meetings/

Please feel free to share this invitation within your professional networks

Fimarad - Filière Santé Maladies Rares Dermatologiques Filière des maladies Auto Immunes et Auto Inflammatoires Rares FAI²R Société Française de Dermatologie Société Nationale Française de Médecine Interne Société Française de Rhumatologie (SFR) SOFREMIP

30/12/2025

As the year draws to a close, we would like to warmly thank all our ERN-Skin members; patients, healthcare professionals, researchers, and partners.

Your commitment and collaboration are at the heart of our work and continue to strengthen our shared efforts throughout the year.

As we move into the new year, we remain committed to working together, sharing knowledge, and supporting our community.

We wish you all season’s greetings, a peaceful holiday period, and our very best wishes for the year ahead.

16/12/2025

The European Commission has published the first-ever Continuous Monitoring Report for the ERNs, confirming a 160% increase in new patients referred to centres between 2018 and 2024 — demonstrating the growing importance of this EU-wide network in strengthening Europe’s health capacity and resilience.

The report presents detailed indicators across seven core areas, including clinical activity, guidelines, registries, training and cross-border collaboration, reflecting the 2023 & 2024 monitoring cycles.

training and education programmes enable rare disease experts to share their knowledge across Europe, helping to grow expertise and ensure excellence. During the reporting period, nearly 14,000 courses, webinars and educational activities reached close to 400,000 clinicians, researchers and multidisciplinary team members across the .

With nearly 110,000 patients captured during the reporting period alone, ERN registries are a vital infrastructure for advancing medical knowledge and improving treatments. This EU-wide resource strengthens diagnosis, supports research collaboration, and underpins the work of clinicians and multidisciplinary teams across Europe.

turn expertise into action. Across the networks, clinicians and multidisciplinary teams have developed, updated, or appraised 1,812 Clinical Practice Guidelines and 738 Clinical Decision Support Tools — empowering doctors across Europe to deliver harmonised, evidence-based care for rare disease patients.

Read the report and discover how ERNs, through the daily work of clinicians and multidisciplinary teams, are improving care for rare disease patients across Europe 👉 https://health.ec.europa.eu/publications/european-reference-networks-monitoring-report-2025_en

16/12/2025

16/12/2025

🚨Tomorrow's webinar postponed to January 13th, 2026

We would like to inform you that our ERN-Skin webinar initially scheduled for tomorrow (December 16th, 2025) has been postponed to January 13th, 2026.

We sincerely, apologize for any inconvenience this change might cause and appreciate your understanding. All other details of the webinar remain unchanged.

Thank you very much for your flexibility, and we look forward to welcoming you on January 16th!

More at: https://ern-skin.eu/webinars/

12/12/2025

A huge thank you to all ERN-Skin members who joined us for the 2025 ERN-Skin board meeting on December 11th-12 in Paris, France.

Your hard work and engagement are very valuable for our network.

And we cannot wait for the impact we can achieve together in 2026!

Stay tuned next week for the meeting insights!

27/11/2025

Call for abstracts extended!

The Call for Abstracts for the 3rd WCRSD - World Congress Rare Skin Diseases (WCRSD) 2026 is now extended until December 20th 2025!

Authors whose abstracts are accepted will be announced in mid-January 2026 and will benefit from a special early bird registration fee until February 28th 2026.

Don’t miss this opportunity to share your research and contribute to the international dialogue on rare skin diseases!

Registration & submission details: https://wcrsd.com/en/call-for-abstracts

24/11/2025

⏳The countdown has started: 95 Days to Rare Disease Day 2026!

🌍 In just 95 days, the world will unite to raise awareness and advocate for equity in health for the 300 million people living with a rare disease.

Since 2008, Rare Disease Day has grown into a truly global movement. Bringing together patients, families, caregivers, researchers, clinicians and advocates. A community standing side by side.

Rare Disease Day matters because too often people living with rare diseases are unseen and unheard. This day shines a light on them, their stories, and their urgent need for equity in healthcare and social opportunities.

We are joining the movement on 28th February 2026 and you can participate too!
🗓️ Mark your calendars
🗣️ Spread the word
🤝🏼 Be part of the movement

Learn more: https://www.rarediseaseday.org/