Industry Policy Committee Proposals on Intractable and Rare Diseases
The Task Force on Intractable and Rare Diseases conducted a comprehensive survey to understand the problems and challenges faced by patients and their families during each stage of the patient journey (onset, diagnosis, treatment, and follow-up) in order to organize issues that the pharmaceutical industry should address and consider solutions for intractable and rare diseases. In February 2023, we released the "Survey on the Problems of Patients with Rare Diseases.
As a result of the survey, the following three issues were identified as those that pharmaceutical companies should address: "There is a lack of information and difficulties in obtaining necessary information," "Society lacks understanding and knowledge of the disease," and "There are limited treatment options and no fundamental treatment. Based on these recommendations, we have compiled a list of recommendations to resolve these issues.
Based on these recommendations, the Task Force on Intractable and Rare Diseases will discuss the issues and will continue to do what we can do one by one to resolve them. We hope that various efforts will be made to solve the problems of patients and families suffering from intractable and rare diseases, including the creation of an environment that facilitates access to necessary information for patients and their families, the reduction of anxiety and strengthening of support for those around them by obtaining correct information, and the promotion of the development of therapeutic drugs.