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
2018 events
Tell your story!
About me
Abigail - United Kingdom
Perthes disease
my name is Abigail and i was diagnosed with chromosome 12 deletion and has learning disabilities. She has Perthes disease in her left hip - her leg length discrepancy and contracture 5th finger in my left
Kari's fight against Medullary
Dianna - United States
Medullary sponge kidney
Kari got sick when she was 17.  She was complaining of a lot of pain.  When the Drs ordered CT scans they realized her kidneys were full of kidney stones.  I took her to see doctors at UVA, Johns Hopkins,
This too shall pass
Tonya - United States
Tarlov cyst
I began having lower back and leg pain with numbness in 2016. I went to a local ER and the Dr got aggravated with me because I refused to take medications without a diagnosis. He basically said I was noncompliant