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It is important to understand the unmet needs and lived experiences of cerebrotendinous xanthomatosis (CTX) patients and their families worldwide to identify common challenges and form a collaborative advocacy plan on an international scale. The information gained from the 2023 CTX International Patient Advocacy Workshop and Survey, along with perspectives from the 2021 Voice of the Patient Report, will help the CTX patient advocacy groups prioritize, collaborate, and share resources, leading to improved outcomes and a better quality of life for patients.

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Cerebrotendinous Xanthomatosis (CTX) Patient and Family Opinions and International CTX Patient Advocacy

  • 章节

  • 发表日期：

    2025年

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  • Jean R. Pickford,
  • Robert D. Steiner,
  • Shosh Benyaish,
  • Neel Odedara,
  • Rubén Hernández-Alcoceba,
  • Hanka Dekker

摘要

It is important to understand the unmet needs and lived experiences of cerebrotendinous xanthomatosis (CTX) patients and their families worldwide to identify common challenges and form a collaborative advocacy plan on an international scale. The information gained from the 2023 CTX International Patient Advocacy Workshop and Survey, along with perspectives from the 2021 Voice of the Patient Report, will help the CTX patient advocacy groups prioritize, collaborate, and share resources, leading to improved outcomes and a better quality of life for patients.