Here is a list of specialists who may play a role in helping to provide specialized care to patients with FA:1-6
While not necessarily involved in day-to-day patient care, a visit to a CCRN center can provide a critical resource for patients and neurologists alike. FA specialists at the CCRN have experience working with hundreds of patients with FA, can provide updates on the latest in FA research, and share information on therapies currently in development.
References: 1. Cook A, Giunti P. Friedreich’s ataxia: clinical features, pathogenesis and management. Br Med Bull. 2017;124(1):19-30. 2. Corben LA, Lynch D, Pandolfo M, Schulz JB, Delatycki MB; on behalf of the Clinical Management Guidelines Writing Group. Consensus clinical management guidelines for Friedreich ataxia. Orphanet J Rare Dis. 2014;9(1):184-195. 3. Friedreich ataxia fact sheet. National Institute of Neurological Disorders and Stroke website. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Friedreichs-Ataxia-Fact-Sheet. Published August 8, 2019. Accessed December 10, 2019. 4. Friedreich’s ataxia. American Academy of Physical Medicine and Rehabilitation website. https://now.aapmr.org/freidreichs-ataxia. Updated September 20, 2013. Accessed December 4, 2019. 5. Christ G, Diwan, S. Chronic illness and aging. Section 2: the role of social work in managing chronic illness care. Council on Social Work Education website. https://www.cswe.org/getattachment/Centers-Initiatives/CSWE-Gero-Ed-Center/Teaching-Tools/Gero-Competencies/Practice-Guides/Assignments-Measurments/CI-Sec2-Role-SW.pdf.aspx. Accessed December 4, 2019. 6. Parkinson MH, Boesch S, Nachbauer W, Mariotti C, Giunti P. Clinical features of Friedreich’s ataxia: classical and atypical phenotypes. J Neurochem. 2013;126(suppl 1):103-117.
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