NAVIGATING THE FRIEDREICH’S ATAXIA JOURNEY
Whether you have Friedreich’s ataxia (FA), care for individuals who do, or are working on FA research, we hope you’ll find this site a helpful resource in understanding the condition. FARA aims to provide up-to-date information, tools, and resources for all stakeholders to help them better understand FA—symptoms, support, solutions, and more.
Other common symptoms can include fatigue, serious heart conditions, scoliosis, and diabetes. FA is life-shortening and affects an estimated 5,000 individuals in the United States and 15,000 worldwide.
FARA has created resources to help guide individuals with FA and their loved ones through the new diagnosis by providing a starting point for learning about FA.
All individuals with FA experience ataxia and neurologic symptoms but the severity and progression of these symptoms differ person by person. Other symptoms of FA, like cardiomyopathy, diabetes, and scoliosis, also vary between individuals and are not always present. As your symptoms of FA change over time, your FA care and management will also evolve.
SKYCLARYS™ was approved by the Food and Drug Administration and the European Commission for the treatment of FA in people aged 16 and older.
There are also several potential future treatments being investigated on the Drug Development Pipeline. Additionally, the FA Clinical Management Guidelines describe different general medications, interventions, and physical therapy available to healthcare providers for people with FA.
When you participate in a research study, you are volunteering to capture your experience with FA as data that can be analyzed. Clinical research can range from non-interventional studies that teach us more about FA in a person to interventional clinical trials that evaluate a new treatment approach.
FARA can assist healthcare professionals when it comes to diagnosis, participation in research, the latest results of clinical trials, and contact information for Friedreich’s ataxia clinicians. Resources are available such as the Clinical Care Guidelines, FA Global Patient Registry, and more.
