Pharmaceutical Industrial Policy Committee Survey on the problems of patients with rare diseases

Patients and their families with intractable and rare diseases face a variety of challenges, such as "it takes time for diagnosis," "treatment options are limited," and "social understanding and support are inadequate. In order to solve these issues, various efforts have been made, including planning and promotion of various projects and policies by the government, daily medical treatment by medical institutions, implementation of basic and clinical research by academia, and support activities for patients by patient groups. In addition to paying tribute to the energetic activities and significant contributions of those involved to date, the JPMA, in order to play a part in efforts to resolve the issues, will launch a task force on intractable and rare diseases in October 2021 to identify issues surrounding patients and families with intractable and rare diseases, and to consider measures to be taken by the pharmaceutical industry. The task force will identify issues surrounding patients and families with intractable and rare diseases and consider measures that should be taken by the pharmaceutical industry. The Task Force is composed of members from multiple pharmaceutical companies and is working in unison across the organization to examine the issues.

The Task Force conducted a survey of patients and families of patients with rare diseases and related organizations in this field in order to obtain suggestions on issues that should be addressed by the pharmaceutical industry. We also checked whether there were any differences between the issues identified by the JPMA and those recognized by the industry. Through the results of this systematic survey of rare diseases, we identified the real issues faced by patients and their families with rare diseases and set the direction of solutions for JPMA to provide a comprehensive and comprehensive report that will help expand and accelerate efforts by not only JPMA but also various stakeholders including government, medical institutions, academia, patient groups, and other industries. We hope that this publication will lead to the expansion and acceleration of efforts not only by pharmaceutical companies, but also by various stakeholders including government, medical institutions, academia, patient groups, and other industries.