2024 WCRSD – Only 3 months left!

The 2024 World Congress on Rare Skin Diseases is starting on June 12th 2024, in exactly 3 months!

It’s time to get ready, register now to participate to this new edition!

👉 To register click here

Follow the official World Congress on Rare Skin Diseases LinkedIn account to keep up with the latest updates.

👉 To access the LinkedIn account click here

Webinar Replays – For ERN-Skin members

ERN-Skin webinar Replays are now available!

If you didn’t get the chance to join us, you can now access our Webinar Replays through our website.

ERN-Skin Webinar ToxiTEN

 

“New insight into the phenotype of eosinophils in DRESS syndrome and drug induced maculopapular exanthema”

Presented by Dr. Frédéric Dezoteux, from Hôpital Huriez du CHU de Lille, Lille, France.

ERN-Skin thematic group on Severe Cutaneous Drug Reactions – Toxic Bullous Diseases (ToxiTEN)

Watch the replay

ERN-Skin Webinar EBStatMax

ERN-Skin webinar on EBStatMax. A clinical trials methodology demonstration project co-funded by the European Joint Programme on Rare Diseases (EJP-RD).

Presented by Johann Bauer and Dr. Georg Zimmermann, Medical University of Salzburg, Austria.

Please find below the Project Overview:

1. Motivation

2. Work Packages:

-WP1: Evaluation & Comparison of methods

-WP2: Educational Material & Concept

-WP3: Web Application (user friendly app)

3. Output summary and next steps

Watch the replay

Upcoming webinars

MOSAIC ERN-Skin Webinar

27th march 2024, 1:00 – 2:00 pm CET

The Cutaneous Mosaic Disorders Naevi & Naevoid skin disorders, complex vascular malformations and vascular tumors (MOSAIC) thematic group is organizing a webinar on:

Recent findings on: “GNAQ/GNA11 Mosaicism Causes Aberrant Calcium Signaling Susceptible to Targeted Therapeutics.”

  • It is presented by Prof. Veronica Kinsler. Professor of Paediatric Dermatology and Dermatogenetics – Great Ormond St Hospital for Children, London, UK.
  • And chaired by Dr. Andrea Diociaiuti. Dipartimento Pediatrico Universitario Ospedaliero. IRCCS Ospedale Pediatrico Bambino Gesù – SEDE GIANICOLO, Italy.
Register now

ART Contest 2024 – My Skin and You

We invite you all to join the art contest!

Since 2015, the Rare Diseases network of the Fondation René Touraine has set up an art contest to raise awareness among the general public about rare skin diseases, to allow patients to express themselves and to encourage discussion.

Each year, there is a different theme related to skin and rare diseases. The theme chosen this year is MY SKIN AND YOU.

Contest rules:
– For kids and adults
– Whatever your age, we all have skin!
– Send your drawings before April 29th to assistant@fondation-r-touraine.org

For more information, click here

👉 Follow the official ART Contest Instagram account: @mapeauraconte

Stay tuned for more!

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