ERN-Skin

28/02/2026

We are sharing another powerful patient story as part of Rare Disease Day 💜

Meet Karin Veldman, President of the Dutch patient association Ichthyosis: Vereniging voor Ichthyosis Netwerken

At ERN-Skin, we believe that listening to patients is essential to improving care. Their experiences remind us why collaboration, research, and knowledge-sharing truly matter

Every story strengthens our commitment: rare should never mean unheard.

🔗 Read her story here: https://jardin-ern.eu/patient-story/karins-story/

Jardin Joint Action

28/02/2026

Today, on Rare Disease Day 💜, we join the global community in raising awareness for people living with rare and complex skin diseases.

Behind every diagnosis is a personal journey. One of strength, resilience, and dedication.

Today, we are sharing two patient stories, kindly created and published by Jardin Joint Action , highlighting the challenges, perseverance, and hard work of two of our patient representatives.

Meet Annemarie Sluijmers Vice Chair & Secretary of LUPUS EUROPE and discover her inspiring journey.

🔗 Read her story: Find the link in our story highlights

28/02/2026

Today, on Rare Disease Day, we stand with the 300+ million people worldwide living with a rare disease. 💜

At ERN-Skin, we proudly join this global movement to raise awareness for rare and complex skin diseases. Together with our network across Europe, we work to improve diagnosis, foster collaboration, and advance research to ensure better care for patients and families.

On this day, we reaffirm our commitment to connecting expertise and supporting the rare disease community across Europe. 💜

26/02/2026

We invite you to sign the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases.

By endorsing this Declaration, you will support the European rare disease community in its efforts to:

🔹 Mobilise political commitment for a comprehensive EU Action Plan on Rare Diseases

🔹 Secure long-term sustainability and recognition for the vital work of the European Reference Networks (ERNs) and the broader rare disease ecosystem

🔹 Strengthen our collective voice to influence EU policy, legislation, and funding priorities.

📢 We are aiming to collect as many signatures as possible by the end of February. Your support now can make a real difference.

To sign the Declaration, please follow this link: https://urldefense.com/v3/__https:/wppsign.eu2.adobesign.com/public/esignWidget?wid=CBFCIBAA3AAABLblqZhAEhyHEzWoWt7eIpkFocvpSdGEFDbkSFlsZdA8bwNgHOfeWCctOQ0KeRt3dGqWXz50*__;Kg!!D9dNQwwGXtA!XOyzqMDSINeSl4hGMhsJjtXVsunXwTSSwkw7dt4hxweIz8OE7E8QA3iVW_XKcxKsWd-UmCmiHX6vBj3dcIMRowq-CiHi$

24/02/2026

🎨 Did you know that this March, the winning artworks from the René Touraine Foundation's 2025 Drawing Contest will be showcased?

Learn more below ⬇️

Art has the power to make the invisible visible. 🎨

This March, the winning artworks from the René Touraine Foundation's 2025 Drawing Contest will be showcased, a moving collection of 16 creations reflecting the perspectives and lived experiences of patient-artists.

Hôpital Necker–Enfants malades, -HP, together with the Rare Diseases Expertise Platform of the AP-HP.Centre – Université Paris Cité hospital group, are pleased to present the winning drawings in the atrium of the Imagine building, where they will be accessible to the public.

A miniature version of the exhibition will also be displayed in the dermatology department at Necker Hospital, extending its reach to patients, families and healthcare professionals.

More than an exhibition, this initiative is a powerful awareness tool, shining a light on rare dermatological diseases while celebrating the creativity and resilience of those who live with them.

12/02/2026

04/02/2026

The Fondation René Touraine - International Foundation for Dermatology has officially launched the 12th edition of its international drawing competition, The Story of My Skin.

🖌️ The 2026 theme is: My skin, my story

⏰ You have until the 15th of April to send them your art. This contest is international, as well as open to all ages and skill levels.

👉 Learn more and take part: https://thestoryofmyskin.wordpress.com/

26/01/2026

📣 Tomorrow's ERN-Skin Webinar postponed to February 10th 2026 from 1:00 pm - 2:00 pm CET

We would like to inform you that our ERN-Skin webinar initially scheduled for tomorrow (January 27th, 2026) has been postponed to February 10th, 2026.

We sincerely, apologize for any inconvenience this change might cause and appreciate your understanding.

👉 Please find below the main details and the link to register:

Organized by Inherited Epidermolysis Bullosa and skin fragility syndromes – Darier disease – Hailey-Hailey disease (EB), this webinar will present "What is new in EB from the EB Research conference in Brazil (January 20–22, 2026)".

Presented by:

- Angelique Sauvestre – Debra patients’ representatives’ perspective
- Prof. dr. Cristina Has (University Hospital Freiburg – Department of Dermatology and Venereology, Freiburg, Germany) – physicians and researchers’ perspective

Chaired by Prof. dr. Christine Bodemer (Hôpital Necker-Enfants Malades – Department of Dermatology and Venereology, Paris, France).

👉 You can now register here: https://ern-skin.eu/webinars/

Thank you for understanding. We look forward to seeing you there!

23/01/2026

We are excited to share with you the first sessions of the 3rd WCRSD programme, taking place July 1–3, 2026, featuring 6 plenary sessions across 3 days that cover key transversal topics in rare dermatological diseases.

More details on these sessions will be shared soon, but for now, you can explore the other themes featured in this 3rd edition here: https://wcrsd.com/en/program

⏳ Only 6 weeks left to benefit from the early bird registration! Register now here: https://wcrsd.com/en/registration

2026 World Congress on Rare Skin Diseases
Fondation René Touraine - International Foundation for Dermatology

20/01/2026

“Pelle fragile, forti nella vita”: A special gathering for EB patients, their families and patient associations

We are pleased to invite you to “Pelle fragile, forti nella vita”, a special gathering organized on rare disease day dedicated to people living with Epidermolysis Bullosa (EB), their families, and patient associations. A day of meeting, listening and sharing and a great opportunity to be together, share stories and build bonds.

Please find below the main details:
- Date: February 28th, 2026
- Time: 10:30 am CET.
- Location: Auditorium Valerio Nobili Ospedale Pediatrico Bambino Gesù Viale Baldelli 38, Rome, Italy

Registration is free but mandatory.

More information: https://ern-skin.eu/ern-skin-meetings/

15/01/2026

Did you know that the ECRD is back in 2026?

The European Conference on Rare Diseases & Orphan Products (ECRD) is back with a new theme - Rare diseases in a changing and competitive Europe: shaping policies to address the unmet needs of people living with rare diseases

🗓️ It will take place on 3-4 June 2026
📍 in Prague & online

Registration is open and participants who register before 26 February 2026 will benefit from exclusive Early-Bird rates.

🔗 Have a look at the program and register: https://www.rare-diseases.eu/programme-2026/

EURORDIS-Rare Diseases Europe