Madisons Foundation

MADISONS Foundation was a nonprofit support resource for parents of children with rare, life-threatening diseases. Founded by Marcy Smith after her daughter was diagnosed with a rare condition, the organization set out to address the shortage of reliable information and parent community available at the time. Its work focused on improving access to information about rare pediatric diseases and encouraging effective communication among parents, physicians, and medical experts. Through its website, MADISONS helped families find information and connect with others facing similar challenges, providing support to hundreds of thousands of parents over its 17 years of operation.

In 2016, the Foundation announced that it was shutting down. Its founder explained that the growth of online rare-disease databases, charitable organizations, and social media had made information and community support more widely accessible. MADISONS Foundation expressed pride in its contribution and directed families to other resources, including the Centers for Disease Control and Prevention, the National Organization for Rare Disorders, and The Hospital for Sick Kids’ AboutKidsHealth website.