Support and Research Groups → Organic Acidemia Association

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Support and Research Groups

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2. Resources
3. Support and Research Groups

Support Groups & Informative Websites

Acidemia Metilmalonica (MMA Support Group in Spain)

Acidemia Metilmalonica Website

Children's Cardiomyopathy Foundation

Association for Families with Metabolic Disorders in Madrid, Spain

Connecting Families, UCD Foundation (Urea Cycle Support Group)

UCD Foundation Website

The Sabina Islas Association for Glutaric Aciduria and Rare Diseases (located in Mexico)

Metabolic Support UK

Metabolic Support UK is the leading organisation for Inherited Metabolic Disorders (IMDs) based in the United Kingdom.

Metabolic Support UK Website

CurePDE Foundation

Committed to making a positive impact on the lives of individuals and families affected by Pryidoxine-Dependent Epilepsy (PDE).

Cure PDE Website

GA 1 Family (GA 1 Support in Spain)

Familias GA Website

Fatty Oxidation Disorders Family Support Group
"All in this together"

FOD Support Website

MERD India (Metabolic Errors and Rare Disease Organization in India)

MERD India Website

MSUD Family Support Group

MSUD Support Website

National Urea Cycle Disorders Foundation

National Organization for Rare Disorders (NORD)

Nonketotic Hyperglycinemia (NKH) or Glycine Encephalopathy

NKH network website

National PKU Alliance

National PKU News

PKU News Website

United Mitochondrial Disease Foundation

VKS - stofwisselingsziekten.nl

American College of Medical Genetics

Clinical Approach to Genetic Cardiomyopathy in Children

Carnitor (Medication for Organic Acidemias)

Coriell Institute for Medical Research

Coriell Institute Website

European Registry and network for intoxication type Metabolic Diseases

Genes in Life Website

Genetic Alliance - Emergency Preparedness Strategies & Resources

Genetic Alliance Website

Leadiant Biosciences (formerly, Sigma Tau Pharmaceuticals)

Leadiant Biosciences Website

National Coordinating Center (for the Regional Genetics Networks)

National Coordinating Center Website

National Institutes of Health (NIH)

Society for Inherited Metabolic Disorders

Society for the Study of Inborn Errors of Metabolism

Someone Special (Personalized books created by a Propionic Acidemia mother and her friend )

Someone Special Website

Recent Post

GA-1 Natural History Webinar

February 18, 2026

Rare Disease Day 2026 – OAA Tshirt Fundraiser

January 26, 2026

Organic Acidemia Natural History Registry has migrated to a new platform!

October 6, 2025

NIH awards more than $15 million to fund two rare diseases consortia

September 26, 2025

Abram & Asa, MMA Cbl B

September 11, 2025

Elizabeth (age 9) and Morgane (age 7), Propionic Acidemia

September 10, 2025

Ryan, 5 months old, Propionic Acidemia

September 8, 2025

Summer 2025 OAA Newsletter (Digital Version Available Now!)

September 4, 2025

Elijah (19), Tyler (22), MMA Mut 0, Liver/kidney transplant

April 14, 2025

Emerald, Glutaric Acidemia, Type 1, Age 2

April 14, 2025

Spring 2025 OAA Newsletter (Digital Version Available Now!)

April 7, 2025

Intro to ABLE Accounts for OAA Families

February 12, 2025

Rare Disease Day 2025 – OAA Tshirt Fundraiser

January 21, 2025

2025 OAA Fundraising Calendar Ready to Purchase!

November 22, 2024

NORD’s new Organic Acidemia Patient Assistance Program

November 22, 2024

Nutricia Changes Production of GlutarAde

October 30, 2024

Jonathan, MMA Mut 0, Age 14

October 15, 2024

Eli, Glutaric Acidemia, Type 1, Age 3

October 14, 2024

Mead Johnson Formula Update – October 2024

October 7, 2024

Mead Johnson Formula Interruption – July 29, 2024

July 29, 2024

Jackson, Methlymalonic Acidemia, Cobalamin C, Age 9

July 22, 2024

Eithan, Propionic Acidemia, Age 2 – Ecuador

July 11, 2024

Luisa, Methylmalonic Acidemia Mut 0, Age 4 – Brazil

July 8, 2024

Thank you Sponsors!!

June 14, 2024

Upcoming Zoom Webinar – Meet our newest physician at the NIH!

April 8, 2024

Hope you can attend the 2024 FOD/OAA Family Forum

April 5, 2024

Ask Me Anything with flok!

March 19, 2024

Rare Disease Day 2024 – OAA Tshirt Fundraiser

January 15, 2024

Update: My Newest Adventure – Michael Clapcich

December 29, 2023

Karli, Propionic Acidemia, Age 34

December 28, 2023

Raechel, MMA, Cobalamin C, age 20

December 28, 2023

Formula Shortage Survey

December 1, 2023

Holiday Fundraiser – Texas Roadhouse Gift Cards!

November 8, 2023

2024 OAA Fundraising Calendar Ready to Purchase!

November 2, 2023

Demo Derby Sibling Honors Brother and others with Organic Acidemias!

August 22, 2023

Meadow, 3-MCC

July 27, 2023

Leo – Isovaleric Acidemia, Age 20 months

July 26, 2023

Summer 2023 OAA Newsletter (Digital Version Available Now!)

July 25, 2023

Webinar Discussion on Liver/Kidney Transplant with other OAA Families

June 11, 2023

Join Us for a Dietician Talk-Exclusively for OAA Families

June 11, 2023

Update on the Rapid Blood Ammonia Testing Instrument

June 5, 2023

Katie – Glutaric Acidemia, Type 1

May 4, 2023

Cameron, Methylmalonic Acidemia, Cbl C, Age 6 years

April 24, 2023

Nolan, Propionic Acidemia, Age 18 months

April 13, 2023

Winter 2023 OAA Newsletter (Digital Version Available Now!)

April 5, 2023

Luca, Davide and Simone

January 13, 1999

Jose

June 15, 2003

Gabriel

October 15, 2004

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