Acyl-coa dehydrogenase, very long-chain, deficiency of
Healthcare/Doctors
How do I find a center of excellence in Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD)?
If your child was diagnosed through newborn screening, the newborn screening program in your state will refer you to a specialist in Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD).
Other lists of specialists treating VLCADD can be found at these websites:
- American College of Medical Geneticists website
- find a genetic specialists section of the Genetic Testing Registry webpage
- Genetic Metabolic Dieticians International webpage
- for treatment in the United States, you can search for the clinic or clinics in your state.
References
- Fatty Acid Oxydation Disorder Family Support Group. https://www.fodsupport.org/index.htm
More Healthcare/Doctors Content
What specialist doctors should I see for a diagnosis of Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD)?
A person with Very Long-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (VLCADD) should be seen by a doctor called a "medical geneticist", "metabolic physician" or "biochemical geneticist" who usually works with a "metabolic dietitian". These specialists are familiar with VLCADD. If your child has had a positive newborn screening test for VLCADD, the newborn screening program in your state will be able to refer you to a metabolic geneticist and dietitian. A medical geneticist can be found by asking your doctor for a referral or looking on the American College of Medical Geneticists website. If you are looking for a metabolic clinic for treatment in the United States, you can search for the clinic or clinics in your state.
A metabolic dietician can be found through the Genetic Metabolic Dieticians International webpage. A genetic professional can also be found on the Genetic Testing Registry Homepage.
References
- New England Consortium of Metobolic Programs. (2013). Acute Illness Protocol Fatty Acid Oxydation Disorders Very Long Chain Acyl CoA Dehydrogenase (VLCADD) Deficiency. http://newenglandconsortium.org/protocols/acute_illness/fatty-acid-oxidation-disorders/VLCADD.pdf
- Fatty Acid Oxydation Disorder Family Support Group. https://www.fodsupport.org/index.htm
- https://www.genetests.org/clinics/