Today is #RareDiseaseDay. As an individual who has three listed rare diseases, I urge all to invest in research to alleviate suffering and increase quality of life of millions with diseases that their low incidence means there is not money to be made by curing them. #IAmRare #PI #PH #TBM

NORD Issues Request for Proposals to Establish New Patient Registries NORD seeks nonprofit organizations to establish two new patient registries via the IAMRARE platform, aiming to enhance patient care and data collection efforts.

NORD Issues Request for Proposals to Establish New Patient Registries #USA #Rare_Diseases #Danbury #NORD #IAMRARE

NORD Launches an Innovative Mobile App for Rare Disease Advocacy and Research The National Organization for Rare Disorders introduces the IAMRARE mobile app, a vital tool enhancing participation in rare disease research, establishing a faster data collection process.

NORD Launches an Innovative Mobile App for Rare Disease Advocacy and Research #United_States #Rare_Diseases #Danbury #NORD #IAMRARE

Solve FSH invests $3M to advance ARM-201 as FSHD treatment Solve FSH invested $3 million to advance Armatus Bio's microRNA-based therapy ARM-201 as a treatment for FSHD, a type of muscular dystrophy.

This is exciting for us rare FSH’rs #Fshd #musculardystrophy
#iamRare

Smiling white individual with purple hair and a red tshirt in front of a hedge with a freedom60 infusion pump held diagonally across chest

Spent rare disease day doing rare disease patient activities like my weekly infusion. #Iamrare #rarediseaseday #primaryimmune #Nord #immunedeficiencyfoundation #wearamask

A female elf sits in a wheelchair with staff in hand and questing supplies at her sides.

#IAmRare and I can do anything! #MGStrong #MGWarrior #MyastheniaGravis #RareDiseaseDay

I support rare disease day

#IAmRare #RareDiseaseDay Learn More at rarediseaseday.org

It's #RareDiseaseDay2025 and Chris is someone who can say #Iamrare cuz he has #FMF & we are #fundraising for the #charity FMF & AID Global Association & raising #RareDiseaseAwareness. Please come by for #Interviews, #gaming, & #Discussion

#Donate!! tinyurl.com/3umnwfpm

youtube.com/live/E8a5Vz9...

Happy Rare Disease Day!!! #iamrare #raredisseasday #curehps HPSnetwork.org