FOD Family Support Group

The FOD Family Support Group is a 501(c)(3) nonprofit organization in the United States, focusing on individuals and families affected by fatty oxidation disorders (FOD). The organization's mission is to connect and network with FOD families and professionals worldwide, providing emotional support, practical information, and updates on diagnosis, research, and treatment for fatty oxidation disorders.

History

The FOD Family Support Group was established in 1991 by a family who lost their daughter to an undiagnosed medium-chain acyl-CoA dehydrogenase deficiency (MCAD) in 1985. This experience led to the creation of the organization to help others dealing with similar rare metabolic conditions.

Objectives and Services

The organization offers various services, including:

• Educational Services: Providing information and updates on fatty oxidation disorders, which include conditions like short chain acyl-CoA dehydrogenase deficiency, very long chain acyl-CoA dehydrogenase deficiency, carnitine palmitoyltransferase 1A deficiency, and glutaric aciduria type II.
• Networking: Connecting families and professionals to share experiences and best practices.
• Emotional Support: Offering support to families affected by FOD, including pro-bono grief support for bereaved families.
• Research and Treatment Updates: Keeping families informed about new developments in the field.

Activities

The organization facilitates family networking and regional meetups to foster a sense of community among those affected by FOD. It also supports educational programs and raises funds for future regional seminars, ensuring that families have access to resources and support without additional financial burdens.

By fulfilling its mission, the FOD Family Support Group plays a crucial role in enhancing the understanding and management of fatty oxidation disorders, providing emotional support, and connecting families across the globe.

[1] https://www.navigatelifetexas.org/en/services-groups-events/parent-groups/fatty-acid-oxidation-disorder-fod-family-support-group [2] https://rarediseases.org/organizations/fod-fatty-oxidation-disorders-family-support-group/ [3] https://www.dhs.wisconsin.gov/children/resources.htm [4] https://www.guidestar.org/profile/83-0471342 [5] https://app.candid.org/profile/8245749