ERN-Skin is the European Reference Network for Rare and Undiagnosed Skin Disorders
Joined March 2023
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π Publication spotlight: European Reference Networks β A flagship activity of the EU in the field of rare and complex diseases (2017β2025)
Read more: link.springer.com/article/10β¦
#RareDiseases #ERNs #EUHealth
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Our IPPK Webinar is starting in a few minutes!
You can still register and join us: ern-skin.eu/webinars/
π» IPPK webinar next week!
π 26th May 2026, 1:00 pm β 2:00 pm CET
The ERN-Skin IPPK thematic group will organize a webinar titled: "When EDD Remains Undiagnosed: How to Move Forward".
π Register here: ern-skin.eu/webinars/
#ernskin #webinar #dermatology #Rare #Skin #EDD
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π» IPPK webinar next week!
π 26th May 2026, 1:00 pm β 2:00 pm CET
The ERN-Skin IPPK thematic group will organize a webinar titled: "When EDD Remains Undiagnosed: How to Move Forward".
π Register here: ern-skin.eu/webinars/
#ernskin #webinar #dermatology #Rare #Skin #EDD
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π‘ Did you know?
3 scholarships are available for French dermatology residents to attend the 2026 World Congress on Rare Skin Diseases π«π·π§¬
β³ Deadline extended to 29 May
Apply: ec.europa.eu/eusurvey/runnerβ¦
#Dermatology #RareDiseases #WCRS
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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?
π Register now: invt.io/1lxb7xgtj4k
#ECRD2026 @eurordis #rarediseases #dermatology #patient
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π» Register to our next ERN-Skin webinar
π The DNA thematic group will organize a webinar titled "From DNA damage to skin cancer: insights from photosensitivity disorderson" tomorrow from 1:00 β 2:00 pm CET.
π Register: ern-skin.eu/webinars/
#Webinar #photosensitivity #dna
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π« CONTEST EXTENDED π«
Good news for artists everywhere, the Fondation Rene Touraine is giving you more time to share your voice! π¨
π© Submit your work via email (JPEG preferred) or by post.
β³ Donβt miss your chance and submit before May 31!
#ArtContest #MySkinMyStory
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Applications are now open for the ITINERARE Rare Disease Summer School
π
June 23β26 | π Kartause Ittingen
π Apply by April 26 and share with colleagues who might be interested!
π itinerare.uzh.ch/en/Events/Rβ¦
#RareDiseases #SummerSchool #Research #PhD #Postdoc #MedicalResearch
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𧬠Undiagnosed Day 2026 β Where diagnosis becomes hope: The power of collaboration and technology in rare diseases
π Event page and registration for the 30th of April: erdera.org/event/undiagnosedβ¦
#UndiagnosedDay #RareDiseases #Research #Healthcare #ERDERA @ERDERA_org
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π All those planning to attend ECRD 2026 in-person are invited to submit proposals for small-group discussion topics.
ποΈ Deadline: 17 April 2026 at 18:00 CET
π rare-diseases.eu/groupdiscusβ¦
#ECRD2026 #GroupDiscussions #RareDiseaseCommunity @eurordis
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π» Register to our next ERN-Skin webinar
π 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 β 2:00 pm CET
π Register now: ern-skin.eu/webinars/
#Webinar #dermatology #patient
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AI-Powered Screening Centres β Call for Expression of Interest
Deadline: 10 April 2026
π Submit your expression of interest: ec.europa.eu/eusurvey/runnerβ¦
π More information: digital-strategy.ec.europa.eβ¦
#Call #EuropeanCommisson #AI #Network
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Join us tomorrow!
π» ERN-Skin webinar
π 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 β 2:00 pm CET.
π Register now: ern-skin.eu/webinars/
#webinar #cmn #sws #dermatology #patient
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Register to the Upcoming High-level Conference on cross-border healthcare and the European Reference networks
π 26 March 2026 in Brussels and Online
π Registration: eu.eventscloud.com/ereg/newrβ¦
π Agenda and more details: health.ec.europa.eu/events/pβ¦
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π» ERN-Skin webinar
π 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 β 2:00 pm CET.
π Register now: ern-skin.eu/webinars/
#webinar #cmn #sws #dermatology #patient
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We are sharing another powerful patient story as part of Rare Disease Day π
Meet Karin Veldman, President of the Dutch patient association Vereniging voor Ichthyosis Netwerken π³π±
π Read her story here: jardin-ern.eu/patient-story/β¦
#RareDiseaseDay #ERNskin #PatientVoices #JARDIN
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Today, on @rarediseaseday π, 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
πjardin-ern.eu/patient-story/β¦
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Today, on Rare Disease Day, we stand with the 300 million people worldwide living with a rare disease. π
At ERN-Skin, we proudly join this global movement to raise awareness for rare and complex skin diseases.
#RareDiseaseDay #ERNskin #RareDiseases
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π¬ Rare skin diseases are more than skin-deep.
Beyond physical symptoms, many individuals experience:
β’ Anxiety and emotional distress
β’ Social isolation
β’ Impact on education or employment
β’ Reduced quality of life
#MentalHealth #RareDiseaseDay #PatientVoice
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π
10 Days to Go - @rarediseaseday: Let's:
πΉ Raise awareness about rare dermatological conditions
πΉ Amplify patient voices
πΉ Advocate for better recognition and support
Together, we can strengthen the rare skin disease community and push for better care and understanding.
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