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!
Von Hippel-Lindau
Heidi - United States
Von Hippel-Lindau syndrome
Von Hippel-Lindau ("VHL") is a rare disease which affects a persons ability to supress tumor growth in certain areas of the body. The research for "VHL" may hold the cure to other types of tumor progression.
My struggle with Misophonia
Christina - United States
Misophonia
Age: 19I have Misophonia.It wasn't until around my early teen years when I first realized that certain noises, such as chewing and breathing, were bothering me a lot more than everyone around me. After
My Ledderhose story
Bashan - United States
Ledderhose disease
I found out I had Ledderhose in 2011. Mine are primarily in my heels. I was told the only surgical option was to have the fascia removed from the bottom of my feet. Not an option. The other is wear wedge