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!
Dercums disease
Suzi - United States
I go under the name Suzi More...my site is www.mysuzimore.com where almost 200 tracks of songs I have produced are located. Almost all of the music I have been videotaped performing is on You Tube and
BBS
Aneeba - United Kingdom
Hello there,My name is Aneeba I am 25 years old and I have bbs which I am bbs10. When I was a baby I was born with six fingers and toes but I have them removed when I was a baby which I wear special shoes.
io non mi arrendo
lydia - Italy
Buongiorno mi chiamo lydia ho 46 anni e sono affetta da una malattia rara rene policistico bilaterale di 2 grado con conseguenza anche su altri organi. Questa malattia ha condizionato la mia vita fin dall'