Genetic Form of Retinitis Pigmentosa with CRB1 Gene Mutation Afflicts 8 Year Old Gracyn

Gracyn is battling Retinitis Pigmentosa and has hope in her genes!

My daughter Gracyn Smith is 8 years old and was diagnosed with Retinitis Pigmentosa (RP) with a CRB1 gene mutation at the age of 5. Retinitis pigmentosa is an inherited, degenerative eye disease in which there is damage to the retina. The retina is the [...]

Deaf & Blind Adventurer with Usher’s Syndrome to Receive Top Honor at RARE Event – Meet Bill Barkeley

Bill Barkeley is a true RARE Champion.  Bill is deaf-blind and battling Usher's Syndrome.  He also runs marathons!

Global Genes | R.A.R.E., during its 1st Annual RARE Tribute to Champions, will be honoring Bill Barkeley for his incredible efforts in support of Usher’s Syndrome, but also for his work to raise awareness, funds and provide inspiration to everyone with a rare, genetic or [...]