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The FOD Registry was created in order to build a comprehensive database of Children and Adults living with a Fatty acid Oxidation Disorder (FOD) such as MCAD, LCHAD, VLCAD, SCAD, TFP, GA 2/MADD, CPT 1 & 2, CUD, CACT, HADH, HMG, MCKAT, 2,4-Dienoyl-CoA reductase, and Unclassified FODs. This database will be accessible to researchers from around the world interested in FODs.

FOD Registry Goals include: to better understand the various presentations and characteristics of the disorders when well and when ill or under stress, determine specific clinical and research areas that may encourage new global research endeavors that have the potential to improve treatments and care for individuals affected by an FOD, and to connect and empower our FOD Families around the world so they do not feel so alone in their challenges and to have access to the most current treatment information that may enrich their/their child’s quality of life.

By completing the Registry questions and sharing your experiences, you will be enhancing the current information about FODs, as well as creating the potential for new research and clinical knowledge that may lead to creating more effective treatments and/or cures for all of the FODs!
 

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FOD (Fatty Oxidation Disorders) Family Support Group™

The FOD (Fatty Oxidation Disorders) Family Support Group™ is an all- volunteer national and international non-profit organization that was 'born' in 1991.

 

 

Our mission is clear... to connect and network with FOD Families and Professionals around the world and to provide Emotional and Grief Support, Family Stories, Practical information about living with these disorders, and Medical Updates to inform Families of new developments in screening, diagnosis, research and treatment. We offer support via facebook and google groups, a National Conference every 2 years, and raise funds for future FOD Research and Clinical Training of new Medical Professionals. Awareness of these disorders is imperative for early diagnosis and treatment, prompting us to be strongly committed to promoting expanded universal and comprehensive Newborn Screening. We are extremely hopeful that our FOD Registry will provide the information needed for researchers to possibly develop new and more effective treatments and/or cures for the FODs!