JPMA "Proposal on Intractable and Rare Diseases
July 31, 2023
Japan Pharmaceutical Manufacturers Association
The Japan Pharmaceutical Manufacturers Association (JPMA) is pleased to announce that its "Proposal on Intractable and Rare Diseases" is now available on the JPMA website.
The "Survey on the Problems of Patients with Rare Diseases" announced in February of this year revealed a variety of issues, among which the following three issues of particular importance for pharmaceutical companies to address have been compiled as recommendations. The full text of the recommendations can be found at the website below.
Important issues to be addressed by the pharmaceutical industry
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Lack of information and difficulty in obtaining necessary information
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Lack of understanding and knowledge of the disease by society
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Limited treatment options and lack of fundamental treatment
Recommendations on Intractable and Rare Diseases
The proposal consists of four chapters. Chapter 1 introduces the "Background" and Chapter 2 makes recommendations regarding the important issues of "(1) Lack of information and difficulties in obtaining necessary information" and "(2) Lack of understanding and knowledge of the disease in society. In Chapter 3, we provide recommendations regarding "(3) Limited treatment options and lack of fundamental treatment" and Chapter 4 is a "Conclusion.
The solutions to these issues complement each other. For example, improving patients' access to clinical trial information is expected to lead to patients' participation in clinical trials and thus contribute to the development of therapeutic drugs. In addition, by improving patients' medical literacy, it will become easier for them to participate in clinical trials, thereby enabling more patient-centered development.
JPMA will continue to engage in active discussions with patient groups, pharmaceutical companies, government, medical institutions, academia, and other stakeholders based on these recommendations to help solve the problems of patients with intractable and rare diseases and their families, and will continue to work toward the following goals: "Creating an environment where patients and their families can easily access necessary information," "Promoting understanding of rare diseases in society," "Improving accessibility to necessary information for patients and their families," and "Improving the quality of life for patients and their families. We will continue to work toward the realization of this proposal by "creating an environment in which patients and their families can easily access necessary information," "promoting understanding of rare diseases in society," and "promoting the development of therapeutic drugs.
Reference
Survey on the problems of patients with rare diseases
For further information, please contact
Public Relations Division, Japan Pharmaceutical Manufacturers Association
- Phone
- 03-3241-0374