Meet Sailaja, from Prurigo Nodularis!

Meet Sailaja, from Prurigo Nodularis!

Sailaja’s journey began when she developed a debilitating and distressing, rare neuro-immunological condition called Prurigo Nodularis almost twenty years ago. Sailaja faced a diagnosis odyssey that lasted for nine years, learning the hard way that as a rare disease...
Meet Mel, Founder of Cure DHDDS!

Meet Mel, Founder of Cure DHDDS!

Mel Dixon is the Founder of the charity Cure DHDDS. Her rare disease journey began when two of her three children were diagnosed with an ultra rare DHDDS gene variant in November 2022. The DHDDS gene variant is ultra rare, newly discovered and appears to be...
Meet Lee, Co-Founder of NCBRS Worldwide Foundation

Meet Lee, Co-Founder of NCBRS Worldwide Foundation

Lee Reavy’s rare disease journey began in 2006 when his son, Callum, was born. Right from the start, Lee and his wife noticed something wasn’t quite right – Callum was small and had distinctive facial features. Later the next year, after a visit to...
Meet Kristie, CEO of Global DARE Foundation

Meet Kristie, CEO of Global DARE Foundation

Defeat Adult Refsum Everywhere Kristie was catapulted into the world of rare diseases in April 2019 when she was diagnosed with Refsum disease. It took the gradual loss of her peripheral vision for her to seek help from a retinal specialist in Maine and Boston, MA....