Friedreich's Ataxia Program Resources

Muscular Dystrophies

The website provides information about MDA clinics, support for patient and families, education resources and transition services to assist youth with disabilities as they prepare for adulthood.


Support and Education Groups

FAPG is an online forum for parents of children with FA where they can communicate with other families going through similar experiences.


Condition Management

Developed for clinicians and patients, these clinical management guidelines seek to ensure better outcomes by improving diagnosis, treatment and management of FA. Read the user's guide for instruction on how best to utilize the full guidelines and find the information you need.


Videos

Watch a recording of the topics presented at the eighth annual Friedreich’s Ataxia Symposium in 2015, including clinical management updates, recent research, information about cardiac function, a conversation about college resources and accessibility, and more.

2016 Friedreich's Ataxia Symposium

Watch a recording of the topics presented at the ninth annual Friedreich’s Ataxia Symposium in 2016, including the effects of symptomatic care in FA, clinical trials and the treatment pipeline, sensory dysfunction, epigenetics of FA, a patient panel on exercise, and more.

2017 Friedreich's Ataxia Symposium

Watch video recordings of the topics presented at the tenth annual Friedreich's Ataxia Symposium in 2017, including development of biomarkers in FA, gene therapy for FA, clinical trials and the treatment pipeline, metabolic and endocrine studies in FA, cardiac updates, adaptive clothing, and more.


Websites

The Friedreich's Ataxia Research Alliance (FARA) is a national, public, nonprofit organization dedicated to curing Friedreich’s ataxia (FA) through research.

The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.