Policy measures taken in Japan to improve the quality of life for patients with rare/intractable diseases

ABSTRACT

Introduction: Rare/intractable diseases are a pressing public health issue and a challenge to medical care worldwide. The Government-supported special measures will be the key to improving the quality of life of patients with rare/intractable diseases.

Areas covered: In this article, the national multiple strategies to overcome rare/intractable disease in Japan, especially the new measures implemented during the past five years, were introduced, with the purpose of providing a reference for other countries coping with rare/intractable diseases elsewhere around the world.

Expert opinion: Special measures will, along with Government support, be key to improving the quality of life of patients with rare/intractable diseases in Japan.

KEYWORDS:

• Rare diseases
• intractable diseases
• medical expenses subsidies
• quality of life

Article highlights

• In Japan, the Government has been working to improve the quality of life of patients with rare/intractable diseases, and the following six projects will be furtherly promoted with the support of the Japanese Government:

• Improvement of the system for the provision of medical care

• Promotion of local support for patients with rare/intractable diseases

• Ensuring in-home medical support for patients with neurological diseases

• Supervision of the training of designated doctors for patients with rare/intractable diseases

• Appointment and operation of review boards for designated rare/intractable diseases

• Collection and handling of data from patients with designated rare/intractable diseases

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Additional information

Funding

This paper was not funded.