Andrew MinerJul 242 minPatient RegistryA goal of the foundation is to better represent our small but growing community. Our newest project requires the support of each family...
Andrew MinerMay 191 minYWHAG Zoom Meeting Follow Up Thank you for everyone that participated in our Zoom meeting. It was great that our community was able to come together from all over the...
Andrew MinerMay 41 minUnderstanding the Journey of Seeking a CureThe road from diagnosis to potential treatment for a rare disease is a troubling journey that is not well known and challenging to say...