Research brings hope to people living with a rare disease
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!
Rare Disease Awareness
Bridget - United States
My name is Bridget Hunnewell, and I have a rare bleeding disorder called Afibrinogenemia. I was diagnosed when I was just 1 day old, due to the fact that my heel sticks didn't stop bleeding. A lot of people
Living rare
Tammy - United Kingdom
Hi everyone!My name is tammy I'm in my early 30s and have a rare condition called eosinophilic gastroenteritis. Whilst people may age and back in my teens it's been hard to admit that I'm not like anyone
My eleven years with N
Andy - United Kingdom
My time associated to NETS The below story is my eleven years in full. This should hopefully explain the highs and lows during my time with NETS and the value of PRRT TREATMENT. Hello, Ladies and Gentlemen,