ERN-Skin

10/04/2026

🧬 Undiagnosed Day 2026 – Where diagnosis becomes hope: The power of collaboration and technology in rare diseases

📅 29th–30th April, 2026
📍 in Gdańsk, Poland

On 30 April, the European Rare Diseases Research Alliance (ERDERA), together with the Wilhelm Foundation, the Rare Diseases Center at the Medical University of Gdańsk and the University Clinical Center in Gdańsk, will host Undiagnosed Day 2026 | Where Diagnosis Becomes Hope: The Power of Collaboration and Technology in Rare Diseases.

It follows a closed, clinician-led round-table held on 29 April.

🔗 Event page and registration for the 30th of April: https://erdera.org/event/undiagnosed-day-2026/

⚠️ Note that places are limited

Erdera

10/04/2026

👉 Group Discussions at ECRD 2026

All those planning to attend ECRD 2026 in-person are invited to submit proposals for small-group discussion topics.

This is a unique opportunity to help shape meaningful conversations and foster collaboration across the rare disease community.

Selected contributors will have the chance to moderate a group discussion on their proposed topic during a dedicated in-person networking session, taking place on 3rd June.

🗓️ Deadline: 17 April 2026 at 18:00 CET

🔗 https://www.rare-diseases.eu/groupdiscussions/

EURORDIS-Rare Diseases Europe

10/04/2026

07/04/2026

💻 Register to our next ERN-Skin webinar

📆 The ERN-Skin ED thematic group will organize a webinar on Sleeping disturbances and skin (final title to be confirmed) on 21st April 2026 from 1:00 – 2:00 pm CET.

It will be:
- Presented by Prof. Brigitte Fauroux, Hôpital Necker-Enfants malades, Paris, France.
- Chaired by Prof. Smail Hadj-Rabia, Hôpital Necker-Enfants malades, Paris, France.

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

03/04/2026

AI-Powered Screening Centres – Call for Expression of Interest

Deadline: 10 April 2026

The European Commission is inviting expressions of interest for the AI-powered Advanced Screening Centres initiative.

This call for expression of interest is meant for healthcare organisations who would like to join the network of European AI-powered advanced screening centres under the Apply AI strategy.

By enrolling in the network, you will participate in a European community supporting the safe and effective use of AI in healthcare.

🔗 Submit your expression of interest: https://ec.europa.eu/eusurvey/runner/EuropeanNetworkOfAdvancedScreeningCentres

🔗 More information: https://digital-strategy.ec.europa.eu/en/policies/ai-screening-centres

30/03/2026

Join us tomorrow!

06/03/2026

Register to the Upcoming High-level Conference on cross-border healthcare and the European Reference networks

📆 26 March 2026 in Brussels and Online

We would like to invite you to the upcoming High-level Conference in Brussels (26 March 2026) on cross-border healthcare and the European Reference networks.

The Conference will be held in a hybrid format, allowing for both in-person and online participation.

Registration is now open for the general public. To follow the conference online, you must register in order to receive the connection details in due time.

👉 Registration: https://eu.eventscloud.com/ereg/newreg.php?eventid=200295777&

🔗 Agenda and more details: https://health.ec.europa.eu/events/patients-rights-cross-border-healthcare-and-european-reference-networks-2026-03-26_en

03/03/2026

💻 ERN-Skin webinar

📆 The MOSAIC thematic group will organize a webinar about MRI in congenital melanocytic nevi (CMN) and Sturge Weber Syndrome (SWS) on 31st March 2026 from 1:00 – 2:00 pm CET.

It will be:

Presented by Dr. Suzanna Koudjis, pediatric neurologist and expert in Sturge Weber Syndrome and Congenital Nevi at Erasmus MC University Medical Centre, Rotterdam, Netherlands.

Chaired by Prof. dr. Suzanne Pasmans, Erasmus MC University Medical Centre, Rotterdam, Netherlands.

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

28/02/2026

We are sharing another powerful patient story as part of Rare Disease Day 💜

Meet Karin Veldman, President of the Dutch patient association Ichthyosis: Vereniging voor Ichthyosis Netwerken

At ERN-Skin, we believe that listening to patients is essential to improving care. Their experiences remind us why collaboration, research, and knowledge-sharing truly matter

Every story strengthens our commitment: rare should never mean unheard.

🔗 Read her story here: https://jardin-ern.eu/patient-story/karins-story/

Jardin Joint Action

28/02/2026

Today, on Rare Disease Day 💜, we join the global community in raising awareness for people living with rare and complex skin diseases.

Behind every diagnosis is a personal journey. One of strength, resilience, and dedication.

Today, we are sharing two patient stories, kindly created and published by Jardin Joint Action , highlighting the challenges, perseverance, and hard work of two of our patient representatives.

Meet Annemarie Sluijmers Vice Chair & Secretary of LUPUS EUROPE and discover her inspiring journey.

🔗 Read her story: Find the link in our story highlights

28/02/2026

Today, on Rare Disease Day, we stand with the 300+ million people worldwide living with a rare disease. 💜

At ERN-Skin, we proudly join this global movement to raise awareness for rare and complex skin diseases. Together with our network across Europe, we work to improve diagnosis, foster collaboration, and advance research to ensure better care for patients and families.

On this day, we reaffirm our commitment to connecting expertise and supporting the rare disease community across Europe. 💜