ERN-Skin

22/10/2025

🧬 Scientific publication!

We’re proud to share the results from the ERN transversal working group on pregnancy and family planning:

🩺 “Pregnancy-related issues in rare and low-prevalence diseases: results of the ERN transversal working group on pregnancy and family planning survey.”

This study explores pregnancy-related challenges across rare and low-prevalence diseases, shedding light on current practices, unmet needs, and the importance of multidisciplinary guidance for women considering pregnancy.

The findings underline the need for better coordination, shared expertise, and dedicated counseling within the ERNs to improve patient care.

📄 Read the full article: https://pubmed.ncbi.nlm.nih.gov/40065363/

Marie-Claude Boiteux

Physicians and patients need to be educated on the emerged unmet needs in order to standardize the information for both HCPs and patients with rare diseases. Educational activities should be considered to help to disseminate information.

15/10/2025

The World Health Organization (WHO) has launched a survey for Member States and relevant stakeholders to gather preliminary information on implementation of the Resolution at various levels. Your responses will contribute to the development of the Global Action Plan (GAP), the strategic framework which outlines the specific actions, objectives, and responsibilities for the WHO and its Member States in implementing the Resolution.

It is vital that the voice of all dermatology stakeholders be heard, including the patient community, medical professionals, research, academia and private sector.

We encourage you to take part by completing the survey. It will ask you about your expectations, experiences, challenges and solutions for successful implementation.

Access the survey here: https://forms.office.com/pages/responsepage.aspx?id=t8AQ9iS9OUuBCz3CgK-1kKcb4rLD_ORCkq4Zw7RYPRtURDU4RzdOUDY3SzcwSUpSSUczV0xBTjhLTi4u&origin=QRCode&route=shorturl

📅 Deadline: Friday October 31, 2025

🌎 Languages: the survey is available in Arabic, Chinese, English, French, Russian and Spanish.

Thank you for your time and active participation in this groundbreaking process that will help improve the lives of patients!

14/10/2025

Just a few days to go!

Join us this Friday for our Incontinentia Pigmenti Scientific Day (online or in person).

👉 Don’t miss out, register now: https://ern-skin.eu/ern-skin-meetings/



Fimarad - Filière Santé Maladies Rares Dermatologiques Incontinentia Pigmenti

10/10/2025

Great news! 🎉

The ERN-Skin board meeting program is now online, and you have more time to register.

🗓️ The deadline is extended to 23 October!

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

08/10/2025

ERDERA's Networking Support Scheme helps promote knowledge sharing on rare diseases and rare cancers through the funding of events. It also encourages the participation from underrepresented European countries in networks.

03/10/2025

💻 Scientific Seminar on Methotrexate or Dupilumab as maintenance therapy for patients with Bullous pemphigoid which one for whom?

Co-organized by ERN-Skin AIBD thematic group and patient association IPPF

📅 27th October 2025 from 5:00 – 6:00 pm CET

Exceptionally this webinar will take place on Monday from 5:00 pm to 6:00 pm CET

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

International Pemphigus & Pemphigoid Foundation

03/10/2025

🚨 Registration is now open!
Take advantage of the early bird rate by registering before February 28 : https://wcrsd.com/en/registration

From July 1 to 3, 2026, the Palais des Congrès de Versailles (France) will host the 3rd edition of the World Congress on Rare Skin Diseases (WCRSD) co-organized by our foundation with ERN-Skin

On the agenda: 4 key topics to be approached
Advances in Genetics and Rare Skin Disorders
Autoimmunity and Inflammation
Innovation in Diagnosis, Tools and Outcome Measures
Patient and Community Perspectives

📢 Call for abstract is open until November 23, 2025: https://wcrsd.com/en/call-for-abstracts

01/10/2025

Incontinentia Pigmenti Scientific Day (Hybrid event)

📅 17th October 2025

Organised by ERN-Skin and lncontinentia Pigmenti France (hybrid format) our upcoming event will take place in Imagine Institute, Paris, France & online

Registration is free but mandatory for everyone.

👉 Programme & more information: https://ern-skin.eu/ern-skin-meetings/

Incontinentia Pigmenti Fimarad - Filière Santé Maladies Rares Dermatologiques

26/09/2025

🔬 Every advance in research and care makes a difference for people living with rare skin diseases.

📅 That’s why the WCRSD - World Congress Rare Skin Diseases , coming 1-2-3 July 2026, is such an important moment.

This prestigious event will bring together experts, healthcare professionals, and researchers from around the world to discuss the latest advancements in the diagnosis, treatment, and management of rare skin diseases.

🗒️ Details on inscription will be shared soon!

🔗 https://wcrsd.com/en/

Fondation René Touraine - International Foundation for Dermatology

26/09/2025

Spécialiste des pathologies cutanées pédiatriques, la médecin a tissé un réseau européen pour améliorer leur prise en charge, toujours avec la même priorité : le bien-être de ses jeunes patients.

25/09/2025

👀 Did you notice?
🎓 Our July e-training course for residents is live!
💡 Don’t miss out, it’s waiting for you!
Available only for our members!

📎 Access the replay here: https://ern-skin.eu/aibd-toxiten-e-training-course-for-residents-mucous-membrane-pemphigoid-mmp-pemphigus-and-drug-induced-reaction-diseases/

07/07/2025

⏳ Only a few days left to register for our e-training for residents!

The session will take place this Thursday from 4 to 6 PM CET.

💻 4 clinical cases illustrating the diagnosis and treatment will be presented:

- Barbara Horwath (Gröningen, Netherlands): MMP
- Pascal Joly (Rouen, France): Pemphigus
- Saskia Oro (Créteil, France) and Marie Tauber (Lyon, France): 2 cases of drug induced reactions

✍🏻 Register now: https://ec.europa.eu/eusurvey/runner/2025_AIBD_and_ToxiTEN_e-training_course

Don’t miss this opportunity to enhance your skills and knowledge.