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#raredisease — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #raredisease, aggregated by home.social.

  1. So much has gone into getting hold of this little cardboard box of pills; upending my life, moving countries, the endless tests. But then it will also mean a halt to the degeneration of my eyesight, hearing, heart, kidneys, and nervous system (and that's pretty great!) so I'm feeling a tad emotional looking at this little box. I can't believe I've actually got it.

    Of course, it *is* ludicrously expensive (1 month supply costs $28,000 AUD, although I only pay 25 bucks. Public healthcare baby!)

    I'm now something of a celebrity at the local Amcal for having the most expensive drug they dispense 🙂

    #RareDisease

  2. Top researcher appointed inaugural Dr Patricia Kailis Chair in Rare Diseases

    Internationally recognised leader in rare neuromuscular disease research Professor Gina Ravenscroft has been appointed the inaugural Dr Patricia…
    #NewsBeep #News #Science #AU #Australia #disease #DrPatriciaKailis #Genetic #ginaRavenscroft #MedicalResearch #Perkins #rarecancercentre #raredisease #StanPerronCharitableFoundation #uwa
    newsbeep.com/au/767024/

  3. Top researcher appointed inaugural Dr Patricia Kailis Chair in Rare Diseases

    Internationally recognised leader in rare neuromuscular disease research Professor Gina Ravenscroft has been appointed the inaugural Dr Patricia…
    #NewsBeep #News #Science #AU #Australia #disease #DrPatriciaKailis #Genetic #ginaRavenscroft #MedicalResearch #Perkins #rarecancercentre #raredisease #StanPerronCharitableFoundation #uwa
    newsbeep.com/au/767024/

  4. I’ll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? —> let’s connect!

    I’m looking forward to present our work at findme2care.de AND hear about all the other projects.

    Also: I’ll be co-hosting an educational session and roundtable discussion titled „Building Patient Registries under the GDPR – The Good, the Bad and the Ugly“ —> there are a few seats left for conference attendees!

    #humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry

  5. DATE: November 07, 2025 at 05:00PM
    SOURCE: BioWorld MedTech

    Direct article link at end of text block below.

    UK’s @MHRAgovuk eyes #RareDisease framework for #therapeutic products

    t.co/FMkePThQ8s

    #medtech

    Here are any URLs found in the article text:

    t.co/FMkePThQ8s

    #medtech

    Articles can be found by scrolling down the page at bioworld.com/topics/85-bioworl .

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