Join us in making the voice of Rare diseases heard
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!
Klippel Trenaunay Weber
Lucy - Afghanistan
My name is Lucy , I'm 13 and when I was 9 I was diagnosed with Klippel Trenaunay Weber Syndrome and Hemihyperplasia , this means my lymphatic system , bones and vains were not formed correctly and also
Scars of MHE
Marie - United States
One thing I can vividly remember through the brain fog is looking at my legs in the mirror before my first surgery. I was born with Multiple Hereditary Exostoses. MHE is a rare genetic bone disease characterized
Langerhans cell histio
Margaret - Australia
In 2014 I saw a Doctor with a small lump on the side of my neck, had an ultrasound. She rang and said I had an inflamed parotid gland and to take pain killers. Over the next couple days the lump swelled