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!
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
My Little Angel
Raechel - Philippines
Schizencephaly
Hi I'm Raechel , I have a daughter who battles Schizencephaly and Seizures, among my 3 children, my youngest got this rare disease, though it's heartbreaking seeing her crying out loud and I even don't