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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. 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

  3. 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

  4. 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

  5. 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

  6. Liebe Mitmenschen.
    Nur noch bis Ende 11.05.2026! #icd11jetzt - Schnellere & bessere Hilfe für Kranke. Bitte zeichnet!
    JEDE Stimme hilft!
    #Lyme #mecfs #LongCovid #lgbtq+ #ChronicPain #RareDisease und viele mehr!

    Petitions-Link:
    epetitionen.bundestag.de/conte
    .

  7. 📣 A new star is born in the cilia world and cell death galaxy: Emilia Kieckhöfer brilliantly defended her PhD today! Congratulations!!! 🎉🥳👍

    #cilia #necroptosis #bbs #raredisease #ciliopathies #celldeath #apoptosis #kidney #cysts #Nphp #Zilien

    @cilia
    @SFB1403 @CECAD
    @UniKoeln

  8. Light-Activated Therapy Improves Vision in Inherited Disease Trial

    A clinical trial shows a light-activated #protein from an injected #gene improves visual abilities in people with advanced retinitis pigmentosa, an #inherited #eye disorder.

    sciencebusiness.technewslit.co

    #News #Science #Business #Biotechnology #GeneTherapy #RP #Vision #Genetic #LightActivated #Chemistry #ClinicalTrial #Retina #RareDisease