Support Resources

Related Metabolic Support Resources

CPT 2 Google Networking Group
Organic Acidemia Association (OAA)
International Organization for Glutaric Acidemia 1 (GA1)
MitoAction
United Mitochondrial Disease Foundation
Immune Deficiency Foundation
Glycogen Storage Disease (US)
Children Living with Inherited Metabolic Disease (CLIMB)
Rare Disease Patient Support in Japan (use translate link)
Italy~Inherited Metabolic Diseases(use translate link)
National Urea Cycle Disorders Foundation
Mothers United for Moral Support, Inc. (MUMS) (National Parent-to-Parent Network Newsletter)
Children's Mitochondrial Disease Network
British Medical Journal: The hunt for mystery genes (youtube video)
CureTheProcess Campaign
Eli's Angels
Maple Syrup Urine Disease Family Support Group
United Leukodystophy Foundation (website) / (email)
Hunter's Hope (krabbe leukodystrophy)
James W Lazzaro Foundation (VLCAD) - email
Georgia Galactosemic Moms
Sigma-Tau Pharmaceuticals, Inc.
Ross Products Division of Abbott Laboratories
Vitaflo - Unique Foods for Individuals with Unique Needs
American Liver Foundation
National PKU Alliance
Metabolic Dietary Disorders Association ~ Australia
Regions 1-7 Newborn Screening and Genetics Collaboratives - Family and Professional Resources in the US
NIH Undiagnosed Disease Program and Info article
Locate a Compounding Pharmacist
America's Compounding Center (takes out-of-state orders for riboflavin, coQ10, drug prescriptions etc and accepts most insurances, except most state Medicaid)

[Please Note: Being listed on our site is not an endorsement of that site or organization.]

Informational Sites for Metabolic Disorders

PubMed (search medical article database)
On-Line Mendelian Inheritance in Man (OMIM)
National Institutes of Health (NIH)
Society for the Study of Inborn Errors of Metabolism (SSIEM)
NIH Office of Rare Diseases Research
National Organization for Rare Disorders (NORD)

Bereavement Resources

The Compassionate Friends
Healing the Grieving Heart Radio Interviews
Genesis Bereavement Resources
Griefnet
National Center for Grieving Children and Families
Center for Coping
The Grief Effect
Deb's Grief Consulting practice in the East Lansing and Lansing, MI area

Educational Discussions

Discussions from Our Online Support Group