#rarediseasecommunity — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #rarediseasecommunity, aggregated by home.social.
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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 -
Podcasts Highlighting Rare Voices From the Rare Disease Community #RareDiseaseCommunity
https://picnichealth.com/blog/9-podcasts-highlighting-voices-from-the-rare-disease-community -
Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine
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Hello 👋 Just checking, do we have an Rare Disease community here on Mastodon?
#RareDisease #RareDiseaseIreland #RareDiseaseCommunity #UsherSyndrome -
Hello 👋 Just checking, do we have an Rare Disease community here on Mastodon?
#RareDisease #RareDiseaseIreland #RareDiseaseCommunity #UsherSyndrome -
Hello 👋 Just checking, do we have an Rare Disease community here on Mastodon?
#RareDisease #RareDiseaseIreland #RareDiseaseCommunity #UsherSyndrome -
Leveraging existing #PatientGroups and networks is key to finding #RareDisease patients to engage in medicines R&D says Inês Alves from ANDO Portugal.
➡️ Read more about how to overcome challenges to #PatientEngagement in the #RareDiseaseCommunity: https://medipace.com/2023/02/28/raredisease-community/
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"What we need is a #PublicPrivatePartnership approach, because the current drug development model does not work in the case of #UltraRareDiseases"
➡️See Nick Sireau's full interview:
https://www.youtube.com/watch?v=RKzwBmUYKF4➡️Read the full article about overcoming challenges in #PatientEngagement in the #RareDiseaseCommunity: https://medipace.com/2023/02/28/raredisease-community/