4th Annual Swings for Sophie Raises $220K!
Sophie’S Hope Foundation had an amazing day on Monday for the 4th Annual Swings for Sophie Charity Golf Event, presented by EchoStor Technologies. There were
Sophie’S Hope Foundation had an amazing day on Monday for the 4th Annual Swings for Sophie Charity Golf Event, presented by EchoStor Technologies. There were
The 2023 U.S. Association for Glycogen Storage Disease conference in Orlando, Florida was held in late June, with strong GSD1b representation. Over 50 1b patients
On this episode of Raising Rare, we have the opportunity of talking with Jamas LaFreniere the father of a daughter with Glycogen Storage Disorder Type 1B.
GSD1b Data Collection Platform – Went live with GSD1b’s first and only Online Patient Registry in partnership with Rare-X and Global Genes. Global Genes –