Join the call for the better coordination of care
28 february 2019
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!
Beautifully and Wonderfully
Brenda - United States
SYNGAP1
Here's our rare disease story...many of you have heard it, some have not.Danika came into this world like any other. Labor was quick, but the doctors did not bring her to me right away and when I looked,
Living with PIC
Lauren - United States
Punctate inner choroidopathy with choroidal neovascularization
Back in 2006 when I was 34 I was noticing an area of warped vision in my right eye. After 6 months it was finally diagnosed as PIC with CNV.  After 4 treatments of Avastin, a colorectal cancer drug, injected
Der "Bewusstseins" -Kampf
Birsel - Germany
FMF (Familial Mediterranean Fever),AA-Amyloidose,u.a.
English:Mrs.Birsel Ağca,who lives in Germany,has FMF (Familial Mediterranean Fever) disease for 20 years,and has dedicated herself to create awareness related to FMF disease.She has two kids,they also