November 28, 2024

The Japan Patient Support Foundation (General Incorporated Foundation, located in Chiyoda‑ku, Tokyo; Representative Director: David Liebreich; hereinafter referred to as “the Foundation”) was established in September 2024 with the objective of building sustainable support systems for patients and their families. Since then, the Foundation has successively launched the patient support websites “Kanshin Hiroba,” “Lysosome Disease Plaza,” and “Children’s Disease Encyclopedia,” and from November, the Foundation has fully commenced its activities. We are committed to providing patients and their families with the information and support needed to lead better lives.

Overcoming disease is never a challenge for a person alone. Especially in the case of intractable or rare diseases, many barriers exist: delays in diagnosis, limited treatment options, and insufficient public understanding. In Japan, support systems to address these issues are less developed compared to Western countries. In response to this reality, we established the Foundation so that patients, families, medical professionals, and companies can collaborate to build a social support system. Going forward, the Foundation will do its utmost to deliver optimal support to each patient.

For more details, please visit our website: https://www.psf.or.jp 

The Foundation’s main activities are as follows:

1. Website Support for Patient Groups & Support Organizations

   We support the development and operation of websites for patient groups and support organizations to facilitate information dissemination.

2. Operation of Patient Support Platform

   We provide a platform centered on patients through which specialist physicians, pharmaceutical companies, and other stakeholders can share information and deepen mutual understanding.

3. Disease Awareness & Public Education

   With the goal of promoting early diagnosis among untreated patients in the field of intractable and rare diseases, we engage in awareness-raising activities. To achieve effective collaboration among various stakeholders, a neutral operating entity is essential, and we believe the Foundation should fulfill this role.

1. Succession of Patient Support Projects from I‑Mobile Inc.

・Operation of Kanshin Hiroba (https://www.kanshin-hiroba.jp)

For patients, the trusted words of others with the same illness carry the greatest authority and encouragement. For those supporting patients, the experiences and voices of people facing the same disease are also invaluable. To fulfill the wishes of patients and their families to meet others who share their feelings, our founder I‑Mobile Inc. launched Kanshin Hiroba in 2007.

After the foundation was established, the operation of Kanshin Hiroba was transferred from I‑Mobile Inc., and the site was renewed in October 2024. Through introducing patient associations, supporting their websites, and more, we aim to provide support that connects patients’ hearts to one another—something that cutting‑edge medical technology or outstanding pharmaceuticals alone could not achieve. Going forward, we aim to build a platform where useful information can be collected from physicians, patient associations, pharmaceutical companies, and our foundation’s secretariat.

・Support for Websites of Patient Support Organizations

To patient support organizations, websites are important tools for disseminating and sharing information. However, many organizations have struggled to fully utilize them due to constraints in staffing, funding, and operational structure. With this background, I‑Mobile Inc. has provided free support in building and operating websites for dozens of organizations. Our foundation will inherit that support and also respond to new requests from patient groups and support organizations for website creation and operation. We will also support websites run by physicians or research groups, striving to deliver more information to patients and their families.

2. New Initiatives as a Foundation

・Promoting Early Detection of Untreated Patients in Intractable & Rare Diseases

It is often difficult to make an accurate diagnosis based solely on symptoms, especially in the case of intractable or rare diseases. We believe that by making information more accessible and promoting deeper knowledge, we can contribute to the discovery and early diagnosis of untreated patients. Given this background, we launched Children’s Disease Encyclopedia (http://www.byokijiten.com) on November 22, which allows users to search by symptoms or disease names and view disease information, possible causes, and related conditions. We plan to reflect physician interviews, columns, and FAQin this platform. We will also proactively conduct disease awareness activities in cooperation with preschools, kindergartens, schools, pediatric and obstetric clinics, and pharmacies.

・Operating Useful Websites for Patients

Currently, information sites for diseases with existing treatments are mainly operated by pharmaceutical companies. However, for many diseases without available treatments, there are very few sources that provide reliable and regularly updated information. In response, we plan, launch, and operate websites that deliver continuous, trustworthy information reflecting patients’ real needs. As our first initiative, we launched Lysosome Disease Plaza (https://www.lysosome-portal.com) on October 4. Going forward, we will update the site with physician interviews, columns, and content based on survey questions collected from patients and physicians.

・Partnerships with Companies and Organizations Sympathetic to Patient Support

To identify more untreated patients and expand opportunities for treatment, and to ensure that patients can continue receiving appropriate care, it is essential to establish an ecosystem linking patients, industry, and society. In support of our mission, several companies—including Alfresa Corporation (head office: Chiyoda‑ku, Tokyo; President: Yusuke Fukujin) and major pharmacy chains—have decided to back the foundation. Through these partnerships, we aim to strengthen support systems for more patients and broaden treatment opportunities.

Name：Japan Patient Support Foundation (General Incorporated Foundation)

Founder：I-Mobile Inc.

Establishment Date：September 27, 2024

Location：13F Pacific Century Place Marunouchi, 1-11-1 Marunouchi, Chiyoda-ku, Tokyo

Business Activities：

1：Awareness campaigns for various diseases
2：Operation of patient support platforms (information dissemination, aggregation, and analysis)
3：Recruitment of collaborators for clinical research (clinical trials, investigational drug trials, etc.)

4：Fundraising to support clinical research

5：Employment support for patients (referrals, dispatch, etc.)

6：Collaboration with overseas companies, organizations, and institutions

Officers：

Councillor：Teruyuki Katori (Former Cabinet Secretariat Counselor for Social Security and Tax Reform, Former Director-General of the Pension Bureau and Employment Equality and Child Family Bureau at the Ministry of Health, Labour and Welfare)

Councillor：Toshihiko Takeda (Policy Advisor, Health and Medical Strategy Office, Cabinet Secretariat; Former Director-General of the Pharmaceutical and Food Safety Bureau and the Health Policy Bureau at the Ministry of Health, Labour and Welfare)

Councillor：Yuta Hashimoto (Director, I-Mobile Inc.)

Director：David Liebreich (Representative Director, I-Mobile Inc.; Chairman, e-Healthcare Inc.)

Director：Ryota Furuya (IT Specialist, Social Entrepreneur, CEO of Machi Coin Inc.)

Director：Keiko Takagi (PR Specialist, Former CEO of Asahi Agency Co., Ltd.)

Auditor：Kenji Matsumoto (Certified Tax Accountant; Representative Partner, Aoyama Accounting Firm)