Research brings hope to people living with a rare disease
28 february
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
2017 events
Tell your story!
Landau Kleffner Syndrome
Michelle Whitelaw - Australia
My name is Michelle Whitelaw. I am from Brisbane Australia. My 13 yr old son, Jai Whitelaw, has Landau Kleffner Syndrome with EESES and Autism. He has idopathic refractory epilepsy. He was diagnosed in
Giving it all to God!!
Zane Beaty - United States
I was diagnosed with (SMAS) on 11/26/10 and spent three weeks in three seperate hospitals that doctors knew nothing about this rare disease.  I then underwent the Rouen-Y surgery after spending to long
Flying to heaven
Aurelia - Romania
Numele meu este Aurelia Cheles, din București și vreau să vă spun câteva lucruri despre viața mea. Am spus că suntem o familie norocoasă, cu doi copii frumoși sănătoși, cât de frumosi! După 3 ani, când