Mastodawn

The #EU4Health Joint Action JARDIN is supporting the integration of European Reference Networks into national healthcare systems, further advancing the fight against rare diseases by bringing together multinational expertise.

Learn more: https://hadea.ec.europa.eu/news/rare-disease-day-2026-how-eu4health-joint-action-jardin-supporting-work-european-reference-networks-2026-02-28_en

#RareDiseaseDay

The #EU4Health Joint Action JARDIN is supporting the integ...
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https://nitter.net/EU_HaDEA/status/2027700320650887402#m

Rare Disease Day 2026: how the EU4Health Joint Action JARDIN is supporting the work of the European Reference Networks (ERNs)

On Rare Disease Day, HaDEA spoke with representatives of the JARDIN Joint Action (JA), Prof. Till Voigtländer and Dr Ursula Unterberger. They explained how the JA is strengthening the work of European Reference Networks (ERNs) by supporting their better integration into healthcare systems in Europe.

European Health and Digital Executive Agency (HaDEA)

HaDEA Mar 4

Today is #RareDiseaseDay.

Did you know that 300 million people worldwide live with a rare disease? Yet, the development of therapies for rare diseases continues to face persistent challenges.

Find out how #HorizonEU projects unlock treatment discoveries: https://hadea.ec.europa.eu/news/rare-disease-day-2026-discover-horizon-europe-projects-advancing-research-and-innovation-rare-2026-02-28_en
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https://nitter.net/EU_HaDEA/status/2027670110203514923#m

Rare Disease Day 2026: Discover Horizon Europe projects advancing research and innovation for rare diseases

Rare diseases affect over 300 million people worldwide, yet only 6% currently have an approved treatment option. To address this challenge, projects funded under the Horizon Europe ‘Health’ programme conduct research to develop much-needed treatments.

European Health and Digital Executive Agency (HaDEA)

clarkiestar Mar 1

“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”

#RareDiseaseDay #raredisease #chronicillness

https://pca.st/episode/cb7574f5-dd62-41ba-986d-686370acc4d6

APDIP Associação Mar 1

O Dia das Doenças Raras passa. A realidade permanece. As imunodeficiências primárias exigem acompanhamento contínuo, políticas adequadas e uma sociedade informada
#RareDiseaseDay #DoençasRaras #ImunodeficiênciasPrimárias #APDIP

Burkhard Tomm-Bub, M. A.Feb 28

#icd11jetzt / #RareDiseaseDay
Tagesgabe. Ein persönliches Foto.
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Mehr Infos im Blog:
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https://kopfmahlen.blogspot.com/2025/06/startseite-icd-11-petition-bundestag.html
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Larissa Schwarz Feb 28

Happy #rarediseaseday oder wie sagt man? Heute ist internationaler Tag der seltenen Erkrankungen. In der Europäischen Union gilt eine Erkrankung als selten, wenn nicht mehr als fünf von 10.000 Menschen betroffen sind. In Deutschland macht das gut 4 Millionen Menschen aus. Euch werden in diesem

LIPID MAPS Feb 28

#RareDiseaseDay: Carbohydrate Research reports a synthetic heparan sulfate biomarker to improve newborn screening for Sanfilippo syndrome 🧬 Glycans link with lipid metabolism, and lipid pathway disruption is common in rare disease. Better tools enable earlier detection ✅️

Synthesis of the endogenous no...

Vivienne Dunstan Feb 28

It’s #RareDiseaseDay today. Here’s a link to my #vasculitis story about the neurological disease I fell ill with in 1994. 1 in a million incidence and frustratingly progressive in my case, despite throwing masses of treatment at it over the years since. https://www.vasculitis.org.uk/living-with-vasculitis/vivs-story #Health #ChronicIllness

Viv Dunstan's Story - Vasculitis UK

I’ve been ill with cerebral vasculitis for a very long time. I was only 22 in 1994, had newly started a full-time funded science PhD. And I started to get ...

Vasculitis UK

Burkhard Tomm-Bub, M. A.Feb 28

28.02.2026
#RareDiseaseDay
#ShowYourStripes
#TagDerSeltenenErkrankungen
#RareDiseaseCommunity
#SeltenVereint
Eine zügige Einführung der ICD-11 würde auch hier sehr helfen! / A swift introduction of the ICD-11 would be very helpful here as well!
Info: https://kopfmahlen.blogspot.com/2025/06/startseite-icd-11-petition-bundestag.html