ERN-Skin

07/11/2025

💻 ToxiTEN webinar coming soon!

📆 25th November 2025, 1:30 pm – 2:30 pm CET

About: Invisible Scars: Psychological and Health-Related Quality of Life Sequelae in Severe Cutaneous Adverse Reactions (SCARs), with a Focus on SJS/TEN.

Speaker: Roni P. Dodiuk-Gad
- Clinical Associate Professor & Head, Dermatology Program, Bruce Rappaport Faculty of Medicine, Technion – Institute of Technology, Israel.
- Head, Inflammatory and Autoimmune Skin Diseases Unit, Dermatology Department, Emek Medical Center, Israel.
- Assistant Professor – Status Only, Division of Dermatology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.

Chaired by Chaired by Prof. Dr. Saskia Oro, from Hôpital Henri-Mondor AP-HP, Paris, France.

Organized by the thematic group on Severe Cutaneous Drug Reactions – Toxic Bullous Diseases (ToxiTEN)

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

05/11/2025

💻 ERN-Skin webinar REPLAY!

Our Scientific Seminar on Methotrexate or Dupilumab as maintenance therapy for patients with Bullous pemphigoid which one for whom? is now available on our website!

Co-organized by ERN-Skin AIBD thematic group and International Pemphigus & Pemphigoid Foundation

📣 If you didn't get the chance to join us you can watch the Replay now!

Available at: www.ern-skin.eu

*For ERN-Skin members

30/10/2025

📢 Call for Abstracts – 3rd World Congress on Rare Skin Diseases

Abstract submissions are now open!
Researchers, clinicians, healthcare professionals, and patient representatives are invited to share their work on rare skin diseases.

All abstracts will be considered. They will be selected by the Scientific Committee for presentation or poster form.
You need to select the topics of your abstract. There are 16 topics:

• Skin cancers and aggressive tumors: predisposing factors
• Autoimmune bullous diseases
• Auto-inflammatory and autoimmune cutaneous disorders
• Complex vascular malformations and tumors
• Epidermal Differentiation Disorders
• DNA Repair Disorders & photosensitivity
• Ectodermal Dysplasia and Incontinentia Pigmenti
• Epidermolysis bullosa and skin fragility
• Inherited Connective Tissue disorders
• Monogenic Fibrosing diseases
• Multidisciplinary networks for a multidisciplinary management (eye disorders, metabolic disorders, etc.)
• Patient education
• Toxidermia
• Artificial Intelligence and rare Skin diseases
• Wounds Healing
• Other

Take part in this international event dedicated to research, collaboration, and sharing expertise.

🔗 Submit your abstract HERE : https://wcrsd.com/en/call-for-abstracts

Fondation René Touraine - International Foundation for Dermatology

24/10/2025

EB Awareness Week starts tomorrow (October 25–31)!

🦋 We are excited to take part in the Inside Out for EB campaign, created by Debra - The Butterfly Skin Charity!

This campaign raises awareness for Epidermolysis Bullosa (EB), a rare and painful skin condition where even the gentlest touch can cause blisters.

💬 But first… what is EB?

We are sharing this document from DEBRA explaining EB, how it affects people’s lives, and why awareness matters.

Over the coming days, we will be turning our clothes inside out to show support and help turn hope into action, and we invite you to join us! 👕

Piel de Mariposa Debra Italia ETS Debra Belgium vzw-asbl

24/10/2025

💡 Did you know that EI Cure Project - Official page and EI Cure Project Research Alliance will organise their first Epidermolytic Ichthyosis Symposium on March 19-20, 2026?

📍 This 2-day Symposium will be held at the Zurich Careum Switzerland.

On March 19th presentations will focus on:
- Patient and Parent Experiences;
- Clinical Classifications and Care;
- New Directions in Care;
- Gene Therapy and Gene-Editing Updates.

And, on March 20th, the Steering Committee of experts will gather to help shape the future of Clinical Care and Research. Please note that attendance on this day is by invitation only, and is not included in the Registration Fee.

ℹ️ Check the program, registration details, and further information here: https://www.eicureproject.com/upcomingevents/p/epidermolytic-ichthyosis-global-symposium

23/10/2025

The countdown is on! Our Scientific Seminar is next week, and registration is still open. We look forward to welcoming you!

23/10/2025

Conférence organisé·e par cutis laxa internationale à Gand - Mercredi 4 Février : Conférence

23/10/2025

REMERCIEMENTS Ce chapitre a été écrit grâce à l'aide de l'EADV, de la Fondation René Touraine et de Thérapeutique Dermatologique. PRÉSENTATION Le (...)

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