Disease Networks, Advocacy and Information
New Hampshire Family Voices
Home - New Hampshire Family Voices
603-271-4525
Rare New England
New England Connection for PKI and Allied Disorders (NECPAD)
Home | New England Connection for PKU and Allied Disorders, Inc.
Global Genes – Allies in Rare Disease
The Courageous Patients Network
CPN | Courageous Parents Network
NeuroJourney Guide from the Courageous Parents Network
NIH - Genetic and Rare Diseases Information Center
Genetic and Rare Diseases Information Center | GARD
Rare Diseases Clinical Research Network
Disease | Rare Diseases Clinical Research Network
National PKU Alliance
Cure Mito Foundation - Mitochondrial Disorders and Leigh Syndrome
Leigh syndrome and Mitochondrial Disease - Cure Mito Foundation
Child Neurology Foundation – Neurology Social Services Network
Neurology Social Services Network - Child Neurology Foundation
Beyond Batten Disease Foundation
Beyond Batten Disease Foundation
BDSRA Foundation for Batten Disease
Batten Disease Support & Research Association
LALD Aware - Lysosomal Acid Lipase Deficiency
End AXD - Alexander Disease
Organic Acidemia Association
Organic Acidemia Association – we care for the rare
HCU Network America for Homocystinuria
Resources and Information on HCU - HCU Network America
National Mucopolysaccharidosis Society
National MPS Society - We Help Cure, Support, & Advocate for MPS & ML
International Pompe Association
International Pompe Association
Gaucher Disease Foundation
Gaucher Disease Support Groups & Resources | National Gaucher Foundation
Smith Lemli Opitz Foundation
Home • Smith-Lemli-Opitz Foundation - Smith-Lemli-Opitz Foundation
National Fabry Disease Foundation
National Fabry Disease Foundation - What Is Fabry Disease?
GM Type 1 Gangliosidosis
Krabbe Connect
Home - Krabbe Disease Information and Support - KrabbeConnect
National Urea Cycle Disorders Foundation
National Urea Cycle Disorders Foundation
United Mitochondrial Diseases Foundation – for MCAD
UMDF | Mitochondrial Disease Education & Research