#raredisease — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #raredisease, aggregated by home.social.
-
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 🙂
-
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 🙂
-
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 🙂
-
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 🙂
-
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 🙂
-
https://www.europesays.com/ie/681410/ Blood protein profiling could improve rare disease diagnosis #blood #Éire #ExomeSequencing #Gene #Genes #Genetic #GeneticInformation #Genome #Genomic #genomics #Healthcare #IE #Ireland #Laboratory #medicine #Protein #Proteomics #RareDisease #Research #Science
-
Social Security Just Added 14 Rare Diseases to Its Fast-Track List — Here Is Who Qualifies
Full story 👇
Learn more: https://www.earthinsider.in/2026/08/social-security-adds-14-rare-diseases.html
#EarthInsider #EarthInsiderNews #EINews #US #America #USNews #USPolitics #SocialSecurity #RareDisease #DisabilityBenefits #BreakingNews #NewsAlert
-
Microsoft explores AI assistant for diagnosing rare diseases
https://web.brid.gy/r/https://nerds.xyz/2025/09/microsoft-ai-assistant-diagnosing-rare-diseases/
-
Please welcome SCiLS, representing a large group of cilia-enthusiasts :applause:
Great to meet you at #Sciencemastodon and the #Ciliverse 🙂 :beamingFace:
-
Pleasantine, this would be great - but: the group was somehow generated automatically - I can't edit the intro 🙁
So we have to keep on mentioning @cilia and adding the hashtags in our "toots". :happy:
#cilia #biology #centriole #developmentalbiology #devbiol #ciliopathy #raredisease #ADPKD #BBS #PCD #flagella #cysts #kidney
#coolestorganelleontheplanet #Ciliverse -
Wonderful to see you here, Greg! A warm welcome to #ScienceMastodon and the expanding #ciliverse ! 🙂 🙂 🙂