Patient involvement is the key to effective research for rare diseases
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
2019 events
Tell your story!
Living with IA in Zimbabwe
Tino - Zimbabwe
Imperforate Anus
“Growing up in Sub-Saharan Africa, Zimbabwe, family and society had convinced me to believe that I was cursed by ancestral gods, in my mother’s womb. I learnt to accept that I was a black sheep, an ugly
Fight The Bite: Battling
Amber - United States
Rocky Mountain Spotted Fever, Alpha-Gal Allergy, & Mast Cell Activation Syndrome
Ticks are most often associated with Lyme disease, but they can also transmit a bunch of other serious health conditions, which often lead to the development of mast cell activation syndrome (MCAS).Summer
Lillie-Maude's Journey
Lillie-Maude - United Kingdom
Chronic recurrent multifocal osteomyelitis
Lillie-Maude is a 10 year old girl from the UK, she was was diagnosed with Chronic recurrent multifocal osteomyelitis which is a one in a million rare disease back in April 2017. She currently has two