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SCA3 FDA Patient-Led Listening Session Summary

On September 22, 2023, the FDA hosted a listening session with advocates from the Spinocerebellar Ataxia Type 3 (SCA3) disease community. The National Ataxia Foundation and our partner organizations led efforts to invite SCA3 community members to share their experiences about living with the rare disease.

Session Objectives

  • To educate FDA staff on the complex issues, variety of physical manifestations, and body
    systems affected by this rare disorder.
  • To educate FDA staff on the serious impacts of SCA3 disease manifestations on patients and
    their quality of life.
  • To educate FDA staff on the scarcity of currently available treatments, tremendous unmet
    medical need, and preferences for future treatments and outcomes.

Topics Discussed

  • An overview of SCA3, including the cause of disease, disease progression, symptomology, and
    the impact on families and caregivers.
  • The symptoms and health effects most burdensome to people with SCA3.
  • The inadequacy of current treatments and unmet medical needs of patients with SCA3.
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