ERN-Skin

ERN-Skin is the European Reference Network for Rare and Undiagnosed Skin Disorders

[ERN-Skin @ERN_Skin]

📖 Publication spotlight: European Reference Networks – A flagship activity of the EU in the field of rare and complex diseases (2017–2025)
Read more: https://t.co/vP9lU7ALCQ
#RareDiseases #ERNs #EUHealth

[ERN-Skin @ERN_Skin]

Our IPPK Webinar is starting in a few minutes!
You can still register and join us: https://t.co/Ifu0emqx0D

[ERN-Skin @ERN_Skin]

💻 IPPK webinar next week!
📆 26th May 2026, 1:00 pm – 2:00 pm CET
The ERN-Skin IPPK thematic group will organize a webinar titled: "When EDD Remains Undiagnosed: How to Move Forward".
👉 Register here: https://t.co/Ifu0emqx0D
#ernskin #webinar #dermatology #Rare #Skin #EDD

[ERN-Skin @ERN_Skin]

💻 IPPK webinar next week!
📆 26th May 2026, 1:00 pm – 2:00 pm CET
The ERN-Skin IPPK thematic group will organize a webinar titled: "When EDD Remains Undiagnosed: How to Move Forward".
👉 Register here: https://t.co/Ifu0emqx0D
#ernskin #webinar #dermatology #Rare #Skin #EDD

[ERN-Skin @ERN_Skin]

💡 Did you know?
3 scholarships are available for French dermatology residents to attend the 2026 World Congress on Rare Skin Diseases 🇫🇷🧬
⏳ Deadline extended to 29 May
Apply: https://t.co/alqoTo14vF
#Dermatology #RareDiseases #WCRS

[ERN-Skin @ERN_Skin]

We are attending the 13th European Conference on Rare Diseases and Orphan Products (ECRD) on 3 & 4 June 2026, in Prague and on a highly interactive virtual platform! Will you join us?
👉 Register now: https://t.co/5UDA0YEQOX
#ECRD2026 @eurordis #rarediseases #dermatology #patient

[ERN-Skin @ERN_Skin]

💻 Register to our next ERN-Skin webinar
📆 The DNA+ thematic group will organize a webinar titled "From DNA damage to skin cancer: insights from photosensitivity disorderson" tomorrow from 1:00 – 2:00 pm CET.
👉 Register: https://t.co/SBGJlpSvHH
#Webinar #photosensitivity #dna

[ERN-Skin @ERN_Skin]

💫 CONTEST EXTENDED 💫
Good news for artists everywhere, the Fondation Rene Touraine is giving you more time to share your voice! 🎨
📩 Submit your work via email (JPEG preferred) or by post.
⏳ Don’t miss your chance and submit before May 31!
#ArtContest #MySkinMyStory

[ERN-Skin @ERN_Skin]

Applications are now open for the ITINERARE Rare Disease Summer School
📅 June 23–26 | 📍 Kartause Ittingen
📝 Apply by April 26 and share with colleagues who might be interested!

🔗 https://t.co/31XpK0ur59

#RareDiseases #SummerSchool #Research #PhD #Postdoc #MedicalResearch

[ERN-Skin @ERN_Skin]

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

🔗 Event page and registration for the 30th of April: https://t.co/aM4CaH0RSL

#UndiagnosedDay #RareDiseases #Research #Healthcare #ERDERA @ERDERA_org

[ERN-Skin @ERN_Skin]

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

🗓️ Deadline: 17 April 2026 at 18:00 CET

🔗 https://t.co/hEswJwdVZP

#ECRD2026 #GroupDiscussions #RareDiseaseCommunity @eurordis

[ERN-Skin @ERN_Skin]

💻 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
👉 Register now: https://t.co/SBGJlpSvHH

#Webinar #dermatology #patient

[ERN-Skin @ERN_Skin]

AI-Powered Screening Centres – Call for Expression of Interest

Deadline: 10 April 2026

🔗 Submit your expression of interest: https://t.co/QRkWtNp5N3

🔗 More information: https://t.co/5miogL99Lm

#Call #EuropeanCommisson #AI #Network

[ERN-Skin @ERN_Skin]

Join us tomorrow!

[ERN-Skin @ERN_Skin]

💻 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.
👉 Register now: https://t.co/SBGJlpSvHH

#webinar #cmn #sws #dermatology #patient

[ERN-Skin @ERN_Skin]

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

📆 26 March 2026 in Brussels and Online

👉 Registration: https://t.co/0qUjvkixrs

🔗 Agenda and more details: https://t.co/GcAyxi1R56

[ERN-Skin @ERN_Skin]

💻 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.
👉 Register now: https://t.co/SBGJlpSvHH

#webinar #cmn #sws #dermatology #patient

[ERN-Skin @ERN_Skin]

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

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

🔗 Read her story here: https://t.co/kK1zwX3eNF

#RareDiseaseDay #ERNskin #PatientVoices #JARDIN

[ERN-Skin @ERN_Skin]

Today, on @rarediseaseday 💜, we join the global community in raising awareness for people living with rare diseases

Today, we are sharing 2 patient stories, kindly created by @jardinjointaction

Meet @AnnemarieS66 from @lupuseurope

🔗https://t.co/kK1zwX3eNF

[ERN-Skin @ERN_Skin]

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.
#RareDiseaseDay #ERNskin #RareDiseases

[ERN-Skin @ERN_Skin]

💬 Rare skin diseases are more than skin-deep.

Beyond physical symptoms, many individuals experience:
• Anxiety and emotional distress
• Social isolation
• Impact on education or employment
• Reduced quality of life

#MentalHealth #RareDiseaseDay #PatientVoice

[ERN-Skin @ERN_Skin]

📅 10 Days to Go - @rarediseaseday: Let's:
🔹 Raise awareness about rare dermatological conditions
🔹 Amplify patient voices
🔹 Advocate for better recognition and support

Together, we can strengthen the rare skin disease community and push for better care and understanding.