Alliances & Resources

Here are organizations PVNH Support & Awareness are either a member of, a member and ally of or we think they can be a great resource for you in order to meet our mission of helping families affected by PVNH and other related neuronal heterotopia disorders, and educating the medical community.

Contact A Family UK (ally and resource)

Canadian Organization for Rare Disorders (member of, ally and resource)

Cortical Foundation (member of, ally and resource)

Genetic Alliance UK (member of, ally and resource)

Genetic and Rare Diseases Information Center (GARD) (ally and resource)

Global Genes Project (ally and resource)

National Organization for Rare Disorders (NORD) (ally and resource)


PMG Awareness (ally and resource)

Orphanet (resource)

Rare Disease Foundation (member of, ally and resource)

Rare Disease UK (member of, ally and resource)

Regroupement québécois des maladies orphelines (member of, ally and resource)