ERN-Skin

13/06/2026

🌍 Today, on International Albinism Awareness Day, we'd like to highlight PROWDLY IN MY SKIN, a campaign by the Global Albinism Alliance.

What we particularly appreciate about this initiative is its focus on personal stories. By sharing lived experiences, the campaign helps raise awareness of albinism while celebrating identity, diversity, resilience, and self-confidence.

📖 We invite you to take a moment to explore the stories featured in the campaign. They remind us that visibility matters, representation matters, and that every person deserves to feel proud in their own skin.

✨ Have you discovered the campaign yet? Have a look at them on their account: Global Albinism Alliance

13/06/2026

01/06/2026

📖 Publication spotlight: European Reference Networks - A flagship activity of the EU in the field of rare and complex diseases (2017–2025)

This article offers a comprehensive overview of the impact and evolution of the European Reference Networks (ERNs) since their launch in 2017.

The publication showcases how ERNs have strengthened collaboration among healthcare professionals across Europe, enabling access to highly specialised expertise for patients living with rare and complex diseases.

Key themes include:
- Cross-border clinical collaboration
- Patient-centred care
- Education and capacity building
- Research and innovation
- Digital health transformation

A valuable reflection on how European cooperation continues to advance equity and excellence in healthcare.

📖 Read the publication: https://link.springer.com/article/10.1186/s13023-026-04341-2?utm_source=rct_congratemailt&utm_medium=email&utm_campaign=oa_20260414&utm_content=10.1186%2Fs13023-026-04341-2



Rare Endo-ERNEpicare ERNEuropean Rare Kidney Disease Reference Network
Euracan EuroBloodNet - European Reference Network on Rare Hematological Diseases ERN eUROGEN
Ern-Eye ERN-LUNG - European Reference Network for rare respiratory diseases MetabERN ERN GUARD-Heart ERN RECONNET Ern-Rnd European Reference Network for Rare Neurological Diseases TransplantChild VASCERN: The ERN on rare multisystemic vascular diseases
VASCERN: The ERN on rare multisystemic vascular diseases

26/05/2026

Our IPPK Webinar is starting in a few minutes!
You can still register and join us: https://ern-skin.eu/webinars/

22/05/2026

💻 IPPK webinar next week!

📆 26th May 2026, 1:00 pm – 2:00 pm CET

The ERN-Skin IPPK thematic group will organize a webinar titled: "When EDD Remains Undiagnosed: How to Move Forward".

It will be presented by Dr Nathalie Jonca, from CHU de Toulouse, Toulouse, France and chaired by Prof. Juliette Mazereeuw Hautier, from CHU de Toulouse, Toulouse, France.

👉 Register here: https://ern-skin.eu/webinars/

21/05/2026

💡 Did you know?

French dermatology residents can apply for a scholarship to attend the 2026 WCRSD - World Congress Rare Skin Diseases. One of the leading international meetings dedicated to rare skin diseases.

The Société Française de Dermatologie is offering 3 scholarships covering:
🎟️ Free congress registration
✈️ Travel and accommodation support up to €890

📍 The congress will take place at Palais des Congrès de Versailles from 1–3 July 2026.

And good news: the application deadline has been extended to 29 May ⏳

This is great opportunity to connect with international experts, discover the latest advances in the field, and be part of the conversations shaping rare skin disease research and care.

Apply here before 29 May 👉 https://ec.europa.eu/eusurvey/runner/SFD_WCRSD

Fondation René Touraine - International Foundation for Dermatology

07/05/2026

We are attending the 13th European Conference on Rare Diseases and Orphan Products (ECRD) on 3 & 4 June 2026, in Prague and on a highly interactive virtual platform! Will you join us?

The ECRD is the largest patient-led, rare disease policy-shaping event held in Europe. With over 700 participants, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community.

🚀 ECRD 2026 will serve as a pivotal milestone in the multi-stakeholder inclusive process towards the launch of a European Blueprint for Rare Diseases.

The event will delve into the most pressing discussions on the future of Europe, exploring the multifaceted challenges and opportunities for the rare disease ecosystem. The conference programme will cover a broad range of policy topics, including therapy development and access to treatments, timely and accurate diagnosis, advances in holistic care, specialised healthcare, health technology assessments, reimbursement decisions, and mental health.

Take the opportunity to play an active role in shaping the future of rare disease policy in Europe and beyond! Register now!

👉 https://invt.io/1lxb7xgtj4k

EURORDIS-Rare Diseases Europe

Register now for the 13th European Conference on Rare Diseases and Orphan Products!

27/04/2026

💻 Register to our next ERN-Skin webinar

📆 The DNA+ thematic group will organize a webinar titled "From DNA damage to skin cancer: insights from photosensitivity disorderson" tomorrow from 1:00 – 2:00 pm CET.

It will be:

- Presented by Dr Léa Dousset, dermatologist at CHU de Bordeaux, Bordeaux, France.

- Chaired by Dr. F***y Morice-Picard, CHU de Bordeaux, Centre de Référence pour les Maladies Rares de la Peau (CRMRP), Bordeaux, France.

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

23/04/2026

💫 CONTEST EXTENDED 💫

Good news for artists everywhere, the Fondation René Touraine - International Foundation for Dermatology is giving you more time to share your voice! 🎨

Following the incredible response to their artbook project, they've extended the submission deadline to May 31.

They’ve already received so many inspiring works, and they can’t wait to discover even more.

🖌️ Theme 2026: “My skin, my story”
What does your skin say about you? Your journey, your identity, your emotions? Whether you’re personally affected by a skin condition or simply moved by the theme, your perspective matters.

✨ Selected artworks will be featured in their upcoming artbook, bringing together 11 years of creation around rare skin diseases. Your work could be part of this meaningful collection.

🎨 Artist tip:
- For the best quality, they recommend scanning your artwork rather than photographing it, or sending the original piece by post.
- Don’t forget to include a short note about your work, they love hearing your story behind it.

🌍 Open to all ages, all skill levels, and artists worldwide.

📩 Submit your work via email (JPEG preferred) or by post.
🔗 Full rules and details available here: https://thestoryofmyskin.wordpress.com/?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAZXh0bgNhZW0CMTEAc3J0YwZhcHBfaWQMMjU2MjgxMDQwNTU4AAGn_iziqwuWDG_kgl1SGlkVJbCZ3hobDJjveBuaeVa6a-OeM9kzaQ_m4Ipt9ZE_aem_dvhKnn0FKpxduvkvpJvKBQ

⏳ Don’t miss your chance and submit before May 31!

16/04/2026

Applications are now open for the ITINERARE Rare Disease Summer School!

📅 June 23–26 | 📍 Kartause Ittingen

Join an intensive 3-day program featuring hands-on learning, cutting-edge research, and discussions with international experts in rare diseases. From therapy development to next-generation sequencing and patient-led research, expand your knowledge in a truly interdisciplinary setting.

- Present your work, get feedback, and connect with peers worldwide
- Open to clinicians, PhD students & postdocs
- Travel grants available + accredited program

📝 Apply by April 26 and share with colleagues who might be interested!

🔗 https://www.itinerare.uzh.ch/en/Events/Rare-Disease-Summer-School0/SummerSchool2026.html