The Pharmaceutical Manufacturers Association of Japan (PMAJ) "Survey on the problems of patients with rare diseases

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February 09, 2023
Japan Pharmaceutical

Manufacturers Association (JPMA) The Japan Pharmaceutical Manufacturers Association (JPMA) is pleased to announce that it 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, the Pharmaceutical Manufacturers Association of Japan (PMAJ) 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.

The Pharmaceutical Manufacturers Association of Japan (PMAJ) is committed to working with all stakeholders to resolve the various issues surrounding rare disease patients and their families identified in this survey, with the aim of realizing a society in which it is easier for patients and their families to live their lives.

Reference materials

Survey on the problems of patients with rare diseases Survey outline, etc.

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