The Alagille Syndrome Alliance is an international nonprofit created to connect families with support and resources related to this rare genetic disorder.
pRVH can often be associated with other pediatric disorders and diseases. The links below provide resources on some related conditions.
pVRH can often be associated with other pediatric disorders and diseases. The links below provide resources on some related conditions.
The Children’s Tumor Foundation’s mission is to drive research, expand knowledge, and advance care for the Neurofibromatosis (NF) community.
Magical Mila Foundation raises awareness about Neurofibromatosis Type 1 and high blood pressure in high-risk infants and toddlers.
The Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and building and supporting NF communities.
TSF’s goals are to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome.
The Vasculitis Foundation is the international organization for people with vasculitis, a family of nearly 20 rare diseases characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues.
WSA works to advance the interests of those with Williams syndrome by providing programming and resources, supporting research, and promoting partnerships and connections.