Join us in making the voice of Rare diseases heard
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
2017 events
Tell your story!
A Spoonful of STRENGTH
Nabila - India
For many people with bleeding disorders, pain is a part of daily life. More than an uncomfortable annoyance, pain can affect every aspect of daily life—the ability to work a full day, attend school or
Idiopathic pulmonary h
Jessica - Sweden
Im a woman, 45 years old living in Sweden. I was diagnosed with IPH; idiopathic pulmonary hemosiderosis in june 2015. I have suffered from severe anemic episodes since 2007. In November of 2014 I had my
Tommy’s story about life
Tommy - United Kingdom
Tommy’s story about life with hypogammaglobulinemia Hello everyone, I was diagnosed with hypogammaglobulinemia seven years ago after 54 years of trying to get to the causes of my ill-health.  My younger