Acyl-coa dehydrogenase, medium-chain, deficiency of
Organizations
Are there good supports for medium-chain acyl-CoA dehydrogenase deficiency (MCAD)?
Support groups are organizations that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for medium-chain acyl-CoA dehydrogenase (MCAD) deficiency include the FOD Family Support Group. This organization represents all fatty oxidation disorders.
The Organic Acidemia Association, and the United Mitochondrial Disease Foundation are umbrella organizations. They represent many different metabolic disorders including MCAD deficiency and the other fatty oxidation disorders.
References
- Medium Chain Acyl CoA Dehydrogenase Deficiency. The National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/medium-chain-acyl-coa-dehydrogenase-deficiency/
- Matern D, Rinaldo P. Medium-Chain Acyl-Coenzyme A Dehydrogenase Deficiency. GeneReviews website. https://www.ncbi.nlm.nih.gov/books/NBK1424/#mcad
More Organizations Content
Where do I find other people with medium-chain acyl-CoA dehydrogenase deficiency (MCAD)?
Is there support for families whose child has died from MCAD?
Where do I find other people with medium-chain acyl-CoA dehydrogenase deficiency (MCAD)?
Support groups are organizations that provide support, information, advice, referrals to physicians and medical centers, and up-to-date information on research and treatments. Support groups for medium-chain acyl-CoA dehydrogenase (MCAD) deficiency include the FOD Family Support Group. This organization represents all fatty oxidation disorders.
There are also online communities for rare disorders such as RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.
References
- Matern D, Rinaldo P. Medium-Chain Acyl-Coenzyme A Dehydrogenase Deficiency. GeneReviews website. https://www.ncbi.nlm.nih.gov/books/NBK1424/#mcad
- Medium Chain Acyl CoA Dehydrogenase Deficiency. The National Organization for Rare Disorders website. https://rarediseases.org/rare-diseases/medium-chain-acyl-coa-dehydrogenase-deficiency/
Is there support for families whose child has died from MCAD?
The [link url=https://fodsupport.org/grief"]FOD Family Support Group[/link] is a nonprofit organization that helps people who are affected by fatty acid oxidation disorders like medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. They offer support and counseling for parents who have lost a child to one of these disorders.
References
- https://fodsupport.org/grief/Grief Support. The FOD Family Support Group website.
