Related Metabolic Support Resources
- FOD Group New Family Packet
- Find a Metabolic Dietitian
- Organic Acidemia Association (OAA)
- MitoAction
- United Mitochondrial Disease Foundation
- Mito Foundation – Australia
- Immune Deficiency Foundation
- Glycogen Storage Disease (US)
- Metabolic Support UK (formerly CLIMB)
- EURORDIS Rare Diseases Europe
- Rare Disease Patient Support in Japan (use translate link)
- Italy~Inherited Metabolic Diseases(use translate link)
- South Africa ~ Laboratory for Inborn Errors of Metabolism/Support
- Greece ~ Society of Patients & Friends of Patients with Inherited Metabolic Disease (use translate link)
- India ~ Metabolic Errors and Rare Diseases Organization of India (parent support group)
- National Urea Cycle Disorders Foundation
- Mothers United for Moral Support, Inc. (MUMS) (National Parent-to-Parent Network Newsletter)
- Children’s Mitochondrial Disease Network (UK)
- Genes in Life
- Maple Syrup Urine Disease Family Support Group
- United Leukodystophy Foundation (website) / (email)
- Hunter’s Hope (krabbe leukodystrophy)
- Leadiant Biosciences (formerly 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
[Please Note: Being listed on our site is not an endorsement of that site or organization.]
Information 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 TV and Radio Interviews
- Genesis Bereavement Resources
- Griefnet
- Deb’s Grief Consulting practice Face-to-face sessions in the East Lansing/Lansing, MI and Ingham County area for death of loved one from any cause [and also Online sessions for bereaved parents in US]
Educational Articles & Discussions & Creating Awareness Projects
- FOD Awareness Article by Kelly Huber and Deb Lee Gould, MEd ~ ‘The Challenging World of Fatty Oxidation Disorders’ in CoSozo Living magazine June 1, 2014 [no longer online]
- FOD Awareness article by Kelly Huber and Deb Lee Gould, MEd ~ ‘Why us? Grappling with the Realities of a Rare Disease Diagnosis’ in CoSozo Living magazine August 1, 2014 [no longer online]
- FOD Awareness article by Deb Lee Gould, MEd ~‘The Power of Support ~ Creating Worldwide Family Support for Fatty Oxidation Disorders (FODs)’ in CoSozo Living magazine Sept 1, 2014 [no longer online]
- Discussions from Our Online Support Group
- College Research Paper: ‘How a Facebook Group Creates a Feeling of Belonging’ by Janet Longmore
- 8th Grade FOD Awareness Brochure Project by Anya Porter