September 29, 2025

The Japan Patient Support Foundation (Headquarters: Chiyoda‑ku, Tokyo; Representative Director: David Liebreich, hereinafter “the Foundation”) is pleased to announce that it has reached its first anniversary since establishment, and that its operated platform Kanshin Hiroba has now exceeded 5,000 users.

The growth of this site is a tribute to the support from many—from patients facing intractable or rare diseases and their families, to support groups, healthcare professionals, researchers, government agencies, and corporate stakeholders. We extend our heartfelt gratitude for the warm support and cooperation we have received.

Going forward, with all of you, we will continue to expand our circle of support and information sharing that values the voices of patients and families. In this release, we present messages received from related parties, together with our major activity achievements during the past year.

Key Achievements Over the First Year 

In the year since its establishment, the Foundation has moved forward with many initiatives in close dialogue with patients and families affected by intractable and rare diseases, and through deepening collaboration across sectors and positions. 

＜Patient Support＞

・Fully renewed the patient support portal Kanshin Hiroba, and launched member‑only pages

・Launched Living with Illness Plaza, a disease‑specific information sharing site

・Launched Children’s Disease Encyclopedia to make information on rare pediatric diseases easier to understand

・Conducted a patient survey (collecting over 2,000 responses)

・Supported over 40 patient organization websites in total

＜Information Dissemination＞

・Established a “Social Security System Corner” (offering easy explanations of systems and support for use)

・Continued active information dissemination via SNS (Instagram, X)

＜Collaborations with Stakeholders＞

・Entered into a collaborative agreement with the Japan Patient Association (JPA)

・Supported information dissemination through website development in cooperation with researchers and doctors

Representative Director David Liebreich states:

“Through our daily efforts to deliver helpful information to patients and families, our work is gradually taking shape. From the second year onward, we will continue activities grounded in the voices of patients and families, organizing and sharing information that is easy to understand and useful in daily life, while expanding the number of site users. At the same time, in collaboration with rare disease research groups and specialists, we will focus on enriching content on disease information for patients and sharing the latest research updates.

We strive to bring security and hope to those bearing anxieties and loneliness. Alongside support organizations, medical professionals, researchers, and government agencies, we will walk forward together toward a society in which no one is left behind.”

～Messages from External Partners～

Koji Ohkoku, Representative Director, Japan Patient Association (JPA)

“I would like to express my respect for the Japan Patient Support Foundation’s efforts to expand support for patients and families through activities such as opening websites for patient organizations and sharing information on Kanshin Hiroba. Because intractable diseases are rare, information is scarce and social understanding is hard to foster, leading to many challenges in medical care and daily life. It is extremely important to deliver reliable information broadly. Going forward, we will closely cooperate with the foundation and, through Kanshin Hiroba and JPA Minna no Machi Flat, transmit timely, beneficial information to patients and families. Let us work together.”

Shingo Fukushima, Executive Director, National Network for Children with Intractable Diseases (Certified NPO)

“The operation of the patient support portal Kanshin Hiroba, support for opening websites for patient organizations, and other initiatives are extremely valuable and reassuring to parent groups. I have high expectations for the foundation’s continuing growth and development.”

Kikuchi / Matsuda, Congenital Diaphragm Hernia Patient & Family Association

“In the past year, we have been greatly supported: we used the website support, and we were introduced on Kanshin Hiroba. On Kanshin Hiroba, not only disease information but also information on available systems and a directory of patient organizations are gathered—it's always a helpful reference. Because we were able to connect with your foundation, we were able to expand our horizons. We pray for the continued success of your foundation.”

Kazuya Tsuboi, Sakura Network Japan (Incorporated Association), Representative Director

“I deeply respect the tremendous support you have given to patients with intractable diseases over the past year. The foundation’s committed work has become a light of hope for many patients. I also sincerely appreciate your efforts in helping us with our Sakura Network Japan website. We hope to cherish this wonderful connection and continue collaborating to support patients. I pray for the further growth of your foundation.”

Dr. Mitsuru Kubota, Chief, Department of General Medicine, National Center for Child Health and Development

“I am a pediatrician. My role is to diagnose and treat children—often sitting in a mother’s lap—who come to me with symptoms. But that alone does not provide full support to patients and their families. Because they need more information, when they search on the web, I want them to encounter correct, reliable information. That is why the information provided by the Japan Patient Support Foundation must be ‘accurate,’ and that such connections formed on that basis will tie into the foundation’s policy of ‘supporting and mutual support among patients.’ I hope to assist in that effort.”

Prof. Kei Murayama, Department of Pediatric and Intractable Disease Medicine (also Pediatrics), Graduate School of Medicine, Juntendo University

“I sincerely respect the patient support portal and Kanshin Hiroba, which have continued to provide really reassuring information for patients and families living with many diseases, including mitochondrial disease. I hope that the circle of activity grounded in the patient’s perspective will expand further and bring peace of mind and hope to more people. Furthermore, with strong collaboration among patient groups and medical professionals, I look forward to seeing that circle of support widen even more.”

Dr. Shin Okazaki, Director, Pediatric Neuroscience & Speech Pathology Department, Osaka City General Medical Center

“Observing the foundation staff’s continuous efforts under the leadership of Representative David Liebreich, I feel deeply moved. In particular, the Kanshin Hiroba initiative—giving patients and their families dependable access to information—is extremely meaningful, especially from the standpoint of those involved in refractory and rare diseases including epilepsy. I deeply sympathize with the representative’s vision of ‘supporting each patient’s voice across society,’ and I sincerely hope that your activities bringing hope to children and their families will continue to expand.”

As for your second year of activities, we will continue to closely follow the voices of patients, families, and members, organize and disseminate information in an easy-to-understand way to help with everyday concerns, and increase the number of people using the site. At the same time, through initiatives in collaboration with rare disease research groups and specialists, we will focus on enriching disease-related content for patients and sharing the latest research information.

For more details about the Foundation:

The Japan Patient Support Foundation is a nonprofit established in September 2024, dedicated to supporting patients and families facing challenges and working to create a better healthcare environment. It engages in providing information on various diseases, operating patient support programs, facilitating information sharing among patients, and pursuing a patient‑centered medical society.