ERN-Skin

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

12/01/2026

💻 MCTD Webinar - It's tomorrow!
📆 January 13th, 2026,
⏰ From 1:00 pm to 2:00 pm CET

Organized by the thematic group on Mendelian connective tissue disorders (MCTD), this webinar will be structured into 2 parts:

🔹 Part 1: An Integrative Machine Learning Approach to Classify Cutis Laxa patients, supported by electron microscopy

🗣️ Presented by:

- Prof. dr. Bert Callewaert, Pediatrician, clinical geneticist at Department of biomolecular medicine, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.

- Dr. Aude Beyens, clinical geneticist at Department of biomolecular medicine, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.

🔹 Part 2: Myhre syndrome: clinical presentation, genotype-phenotype correlations and clinical severity score

🗣️ Presented by:

- Dr. Eva Van Belleghem, Department of biomolecular medicine, Center for Medical Genetics, Ghent University Hospital, Ghent, Belgium.

Chaired by Dr. Serwet Demirdas (clinical geneticist at the Erasmus Medical Center in Rotterdam, The Netherlands).

👉 If you haven't registered yet, make sure to sign up: https://ern-skin.eu/webinars/

08/01/2026

ERDERA: Exploring RD Researchers' Needs for Consultancy Services survey

Erdera has opened its community survey and they are calling on everyone involved in rare disease research to help identify where expert consultancy can make the biggest difference.

Whether it’s ethics and regulatory alignment, data readiness, PPIE, IP and innovation, or study start-up… your input is valuable!

By sharing your practical insights, you’ll help them design targeted, sustainable support services that make research smoother, stronger and faster across Europe and beyond. 🌍

🔗 More info: https://loom.ly/IbXYIfw

📝 Access the survey: https://loom.ly/4PY2_TY

🔄 Share this with your network to help gather diverse perspectives and strengthen the evidence base.

Dear Respondent,  We are contacting you in the framework of the European Rare Disease Research Alliance (ERDERA), the new European Partnership on Rare Diseases launched in September 2024 to improve the health and well-being of the 30 million people living in Europe with a rare disease by advanc...

07/01/2026

📣 2 Days left !

You still have some time to register and join the First DEGOS disease workshop on January 9th from 3:00 pm to 6:00 pm CET

🩺💻 First DEGOS disease workshop (Malignant atrohic papulosis): An ultra-rare disease that must be recognized

Are you a healthcare professional or researcher working in rare diseases?

We invite you to the first Degos Workshop taking place on January 9 from 15:00 to 18:00 CET, as a virtual event 🌐.

Participation is free of charge but registration is mandatory.

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

Please feel free to share this invitation within your professional networks

Fimarad - Filière Santé Maladies Rares Dermatologiques Filière des maladies Auto Immunes et Auto Inflammatoires Rares FAI²R Société Française de Dermatologie Société Nationale Française de Médecine Interne Société Française de Rhumatologie (SFR) SOFREMIP

02/01/2026

🎯 Fondation René Touraine new challenge!

Did you know that our partner Fondation René Touraine - International Foundation for Dermatology has a new challenge; to publish a book compiling the drawings of the participants to their art contest over the last 10 years.

🎨 Since 2015, the international competition “The Story of My Skin” has invited young participants worldwide to express what their skin means to them: difference, imagination, light, fragility, strength, or curiosity.

Their drawings form a unique collection - sensitive, poetic, and sometimes unexpected.

This book is more than a collection of drawings - it is an act of pride.

For many participants, seeing their artwork published in a real book is a way:

- to rebuild confidence,
- to feel valued,
- to show the world their creativity rather than their condition.

In order to carry out this project, a crowdfunding on Kickstarter platform has been launched. Help meet this challenge!

🔗 https://www.kickstarter.com/projects/fondrt/ma-peau-raconte-le-livre

Quand les enfants transforment leur maladie en art.

31/12/2025

🩺💻 First DEGOS disease workshop (Malignant atrohic papulosis): An ultra-rare disease that must be recognized

Are you a healthcare professional or researcher working in rare diseases?

We invite you to the first Degos Workshop taking place on January 9 from 15:00 to 18:00 CET, as a virtual event 🌐.

Participation is free of charge but registration is mandatory.

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

Please feel free to share this invitation within your professional networks

Fimarad - Filière Santé Maladies Rares Dermatologiques Filière des maladies Auto Immunes et Auto Inflammatoires Rares FAI²R Société Française de Dermatologie Société Nationale Française de Médecine Interne Société Française de Rhumatologie (SFR) SOFREMIP