JPMA "Survey on the problems of patients with rare diseases
February 09, 2023
Japan Pharmaceutical Manufacturers Association (JPMA
) The Japan Pharmaceutical Manufacturers Association (JPMA) has conducted its first "Survey on the problems of patients with rare diseases" and published the results of the survey on the JPMA website.
The survey consists of an Internet survey (Survey 1) and an interview survey (Survey 2). The purpose of the survey is to understand the current problems of patients with rare diseases and their families from the onset of the disease to the present, their thoughts and requests regarding the development environment of therapeutic drugs, drug loss, and other trends. The purpose of the survey is to understand the current issues and to develop solutions for the future.
Survey on the problems of patients with rare diseases
Through this survey, we identified 10 major problems that rare disease patients and their families have along their patient journey*. Of these, JPMA believes that the following three issues should be given the highest priority for resolution: "Lack of information and difficulty in obtaining necessary information," "Lack of understanding and knowledge of the disease by society," and "Limited treatment options and lack of fundamental treatment.
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*Patient Journey: A term that refers to the journey of how patients think, feel, and act in their medical care, daily life, and social life from the onset of the disease to the present.
JPMA is committed to working with all stakeholders to resolve the various issues surrounding patients with rare diseases and their families identified in this survey, and to realize a society in which it is easier for patients and their families to live.
Reference materials
Survey on the problems of patients with rare diseases Survey outline, etc.