Regarding the JPMA’s “Survey on the Challenges Faced by Patients with Rare Diseases”
February 9, 2023
Japan Pharmaceutical Manufacturers Association
The Japan Pharmaceutical Manufacturers Association (hereinafter referred to as “JPMA”) is pleased to announce that it has conducted its first-ever “Survey on Challenges Faced by Patients with Rare Diseases” and has published the report on the survey results on the JPMA website.
This survey consists of an online survey (Survey 1) and in-person interviews (Survey 2). Its purpose is to investigate and gather insights into the challenges faced by patients with rare diseases and their families from the onset of the disease to the present, as well as their views and requests regarding the therapeutic drug development environment and trends such as drug loss. The goal is to identify current challenges and use this information to develop future solutions.
Survey on Challenges Faced by Patients with Rare Diseases
Through this survey, 10 major challenges were identified along the patient journey* faced by patients with rare diseases and their families.Among these, we at the JPMA consider the following three issues—“Lack of information and difficulty obtaining necessary information,” “Lack of public understanding and knowledge about the disease,” and “Limited treatment options and lack of a cure”—to be the highest priority issues that must be addressed.
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*Patient Journey: A term referring to the path a patient takes—from the onset of the disease to the present—including how they think, feel, and act in relation to medical care, daily life, and social life.
In response to the diverse challenges facing patients with rare diseases and their families identified in this survey, the JPMA will work in collaboration with all stakeholders to address these issues and aims to realize a society where patients and their families can live more comfortably.
Reference Materials
Survey on the Challenges Faced by Patients with Rare Diseases: Survey Overview, etc.