Rare Leader: Deborah Fowler, President and Founder of Soft Bones

The Basics Name: Deborah Fowler Title: President…

RARE Disease Lobby Day – February 28 – Washington, DC
RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and… Continue Reading
Shakes and Stones — Life with Cystinuria and CIDP
Hi, my name is Andy. I was born in Watford in the UK back in 1975.  In 1994, I moved to Australia to attend University.  This is also the… Continue Reading
Lady Gaga – ‘Born This Way’ Foundation (BTWF) Launches To Promote Acceptance
“Whether life’s disabilities left you outcast, bullied or teased.  Rejoice and love yourself today ’cause baby, you were born this… Continue Reading
Sibilings Have First Known Cases of Duplication Chromosome 14q32.33
Vanessa and Jacob both suffer from a very rare genetic disease. They are the first known cases of duplication chromosome 14q32.33. They both… Continue Reading
Niko Syndrome – Our Search For A Diagnosis For A Rare Disease
Our eight-year-old Nico could likely give a pretty extensive tour of the Hospital for Sick Children (SickKids), his home away from home.… Continue Reading
Spooner Family Searches For Diagnosis For Daughters Rare Disease
Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising… Continue Reading
Marshall and Me – My Hero Brother Is Fighting Krabbe Leukodystrophy
At 17 months of age, he was diagnosed with a rare Leukodystrophy called Krabbe’s Disease. A genetic disorder affecting the nervous system… Continue Reading