vivdunstan, 3 months ago to neuro

It's Rare Disease Day again, and time to reshare my experiences with a 1 in a million (literally!) progressive neurological disease, cerebral vasculitis. I've written a lot about it before, but I think my "Implications of living with a rare disease" blog post is a good one, which also addresses the experiences of other people living with other rare diseases. https://vivsacademicblog.wordpress.com/2016/02/29/implications-of-living-with-a-rare-disease/ #RareDiseaseDay #RareDiseaseDay2024 #Vasculitis #Neuro #NHS

Neferure, 3 months ago to random

Today is Rare Disease Day. I have a disease that is not particularly rare, but is considered so because it's underdiagnosed, misunderstood and some of the types are extremely rare.

If there were more funding for research and more training for doctors, perhaps we wouldn't be considered rare any more. 🦓

#RareDiseaseDay #RareDiseaseDay2024 #EhlersDanlosSyndrome #LeapYear #ShowYourStripes #ChronicIllness #ChronicPain

Text "Je soutiens journée des maladies rares le 29 Fév 2024 #RareDiseaseDay rarediseaseday.org"