Acyl-coa dehydrogenase, very long-chain, deficiency of
Organizations
Are there good support groups for Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD)?
The primary support group for Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD) is the Fatty Acid Oxidation Disorder Family Support Group. This support group offers support for families dealing with any of the larger category of genetic disorders that affect the body's ability to burn fat for energy.
Fatty acid oxidation disorders are part of a larger group of disorders called "mitochondrial diseases." And so support groups for people with mitochondrial diseases may also be of help. The largest of these groups in the US is the United Mitochondrial Disease Foundation (UMDF)
References
- Fatty Oxidation Disorders Family Support Group. Retrieved 1 June 2016. Available from: Fatty Acid Oxidation Disorder Family Support Group
- United Mitochondrial Disease Foundation. http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7929671
More Organizations Content
Where do I find other people with Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD)?
Where do I find other people with Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD)?
The metabolic genetics clinic that cares for you or your family member may be able to help connect you with other families in your area with Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD). There are also online family support organizations where you will be able to meet other families.
The primary support group for VLCADD is the Fatty Acid Oxidation Disorder Family Support Group. This support group offers support for families dealing with any of the larger category of genetic disorders that affect the bodies ability to burn fat for energy.
Fatty acid oxidation disorders are part of a larger group of disorders called "mitochondrial diseases." And so support groups for people with mitochondrial diseases may also be of help. The largest of these groups in the US is the United Mitochondrial Disease Foundation (UMDF)
References
- Fatty Oxidation Disorders Family Support Group. Retrieved 1 June 2016. Available from: [Fatty Acid Oxidation Disorder Family Support Group
- United Mitochondrial Disease Foundation. http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7929671
Is there support for families whose child has died from Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD)?
Grief support is available through the Fatty Acid Oxidation Disorder (FOD) support group at https://fodsupport.org/grief.
A grief support brochure is available at https://www.fodsupport.org/documents/Jan2014GriefConsultbrochure.pdf
References
- Fatty Oxidation Disorders Family Support Group. Retrieved 1 June 2016. Available from: https://fodsupport.org/grief
- Fatty Oxidation Disorders Family Support Group. Retrieved 1 June 2016. Available from: https://www.fodsupport.org/documents/Jan2014GriefConsultbrochure.pdf
