Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
Rare diseases heard day 2016 29 february Only 100 days remaining
2019 events
Tell your story!
Fabry disease by Ludovic
ludovic - Belgium
Fabry disease
My name is Ludovic I’m 40 I have Fabry’s disease not having had the chance to be like the others being small. I decided to fight my illness enjoying life as if every moment was the last. I want to send
our story
danielle - Denmark
idiopathic ketotic hypoglycemia
Our story Issues with multitasking, excessive activity and restlessness, poor planning and disorganization, lack of focus, issues with memory loss, issues with on-going depression and years of issues with
Living like every day could
Theresa - United Kingdom
Idiopathic Intracranial hypertension
I have a rare disease that suddenly changed my life. One day I was me Theresa the next I was someone I didn’t recognise, who I did like or who I wanted to be. It changed me I was no longer the person I