#raredisease — Public Fediverse posts

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

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

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

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

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

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/

@scils_eu
@cilia

Please welcome SCiLS, representing a large group of cilia-enthusiasts :applause:

Great to meet you at #Sciencemastodon and the #Ciliverse 🙂 :beamingFace:

#cilia #ciliopathies #raredisease #PHDstudent

@Mill_lab

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

@greg_pazour

Wonderful to see you here, Greg! A warm welcome to #ScienceMastodon and the expanding #ciliverse ! 🙂 🙂 🙂

#Cilia #raredisease #cellbiology #NewHere #Sciencefediverse