Headquartered in the Washington, D.C. area, FARA maintains an excellent working relationship with U.S. federal policymakers at the National Institutes of Health (NIH), as well as the U.S. Congress.

National Institutes of Health (NIH) (www.nih.gov)
NIH — the premier US federal government entity responsible for biomedical research. The NIH conducts intramural research programs within its own institutes and funds extensive research at laboratories throughout the United States and around the world. The NIH consists of over twenty different institutes devoted to various types of disease. The NIH Institute of primary interest to the FRDA community is the National Institute of Neurological Disorders and Stroke (NINDS). However, because of the broad spectrum of FRDA symptoms and patient population, several other NIH institutes participate in FRDA research activities (for example, the Institutes of Child Health and Development; Heart, Lung and Blood; Diabetes and Digestive and Kidney Diseases; and the Institute on Aging.

National Institute of Neurological Disorders and Stroke (NINDS) (www.ninds.nih.gov)
The National Institute of Neurological Disorders and Stroke (NINDS) is the leading NIH institute supporting biomedical research on disorders of the nervous system. FARA's president serves on the NINDS Advisory Council and participates in the Council's quarterly meetings, where the Council advises the NINDS Director on matters of Institute policy and reviews all applications for NINDS research grants. FARA also works closely with the NINDS leadership to advance FRDA clinical trials and enhance the Institute's two-way communications with the patient and scientific communities.

US Congress
As a patient advocacy group, FARA raises public awareness of Friedreich's ataxia through a variety of activities, including congressional testimony. FARA works regularly with congressional points of contact, tracking and encouraging progress in the development of the NIH budget. FARA also keeps abreast of the legal, moral, and ethical implications that arise in conducting research.

Read the FARA Congressional Update

Windows on Washington (www.ataxia.org) — A useful resource provided by the National Ataxia Foundation.