WINPR (World Index of Patient Groups for Rare Diseases) is a website that allows you to cross-search national and international patient organizations by disease name in each language.

　It is estimated that there are about 300 million patients with rare diseases worldwide, and because of their small numbers, they have not been adequately studied and treatments have not been established. In addition, many patients and their families have been unable to exchange information and interact with patients and their families with the same disease and have been left with anxiety.

Under these circumstances, various international collaborations among researchers, regulatory authorities, and so on in the field of rare diseases have been expanding in recent years. Patient organizations are also beginning to understand the importance of promoting cross-country collaboration to share the valuable experiences and information of patients from all over the world.

With the aim of furthering this kind of collaboration and connecting patient organizations around the world, we have released the WINPR website.

WINPR is the first place you can use your native language to get to know your overseas patient organization. If you would like to make further contact, you can go directly to the information listed. You can also contact “the Data Provider agency” that provided the individual patient group information.

Connect with overseas patient organizations in your native language through the WINPR.

First, try typing the name of the disease in your native language!

The pre-release phase of WINPR is targeted at Northeast Asian countries. We will then consider expanding to the Asia Pacific and other regions in a phased manner.

We also plan to share not only information on patient organizations but also information on rare diseases, including national legal measures.

WINPR website：https://winpr.info/