Alliances & Resources

The following organizations are either ones we are a member of , or which are an ally of PVNH Support & Awareness, or which may be a great resource for you to learn more about PVNH and other related neuronal heterotopia disorders or rare related disorders.

Contact A Family UK (ally and resource)

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

Disease Infosearch (resource)

Genetic Alliance UK (member of, ally and resource)

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

Global Genes (member, ally and resource)

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

Neuro-MIG (partner, ally and resource)

PMG Awareness (ally and resource)

Orphanet (resource)

Rare Disease Foundation (ally and resource)

Rare Disease UK (member of, ally and resource)

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

REN Rare Epilepsy Network (member of, ally and resource)