ABETALIPOPROTEINEMIA AND RELATED DISORDERS FOUNDATION

Description

Abetalipoproteinemia and Related Disorders Foundation is a non-profit, volunteer organization that provides guidance on needed scientific research, diagnosis, and management of abetalipoproteinemia and related hypolipidemias, such as chylomicron retention disease and familial hypobetalipoproteinemia. Because these are very rare illnesses, there is limited research and no cure. Patients can sometimes go undiagnosed for years, and insurance companies may not recognize treatments.

Dr. Mahmood Hussain, a researcher, received several emails from patients and caregivers to seek help with diagnosis, treatment, and other resources. Together with Dr. Richard Deckelbaum, he conceived the concepts of the foundation to spread awareness of the disease, encourage research, find treatments, and advocate for patient needs. Patients, caregivers, researchers, and medical doctors from three different countries came together in 2019 to tackle these issues.