FDA offers new hope for families facing rare disease
FDA offers renewed hope for families facing rare disease with the launch of the Accelerating Rare disease Cures (ARC) Program… Read More
Naomi shares Ethan’s story of ARX, a rare genetic disorder
Naomi’s Story Naomi’s blog, Ethan’s Stars, shares stories from their family and from Ethan’s life with Aristaless Related Homeobox or ARX. It took the family two years to get the diagnosis of ARX, a rare genetic disorder which causes epileptic seizures and developmental delay. According to Naomi, “Every year Ethan continues to … Read More