Referring to Specialists

Because Friedreich’s ataxia (FA) is a multisystem disease, a proactive multidisciplinary approach to care can help provide the care patients need.1

Assembling the right care team will vary based on a patient’s specific needs and circumstances1

Here is a list of specialists who may play a role in helping to provide specialized care to patients with FA:1-6

  • Genetic counselor
  • Primary care physician
  • Cardiologist
  • Endocrinologist
  • Pulmonologist
  • Ophthalmologist/Audiologist
  • Orthopedic surgeon
  • Physical/Occupational therapist
  • Other specialists who can help your patients include physiatrists, podiatrists, speech therapists, nutritionists, palliative care teams, and social workers

Another critical resource for your patients with FA is the Collaborative Clinical Research Network in Friedreich’s Ataxia (CCRN in FA)

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.

Information and clinical considerations for managing patients with Friedreich’s ataxia

For more detailed information about the role of each specialist in FA symptom management, download the FA Backgrounder.

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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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