Industry Policy Committee Other

As of September 1, 2024

Company name Activities being undertaken in relation to intractable and rare diseases
Astellas Pharma Inc. Astellas Pharma Inc. runs a project called "Innovation for NEW HOPE", which aims to realize a society in which the most advanced therapies (cell medicine and gene therapy) are delivered continuously and as early as possible in Japan. Innovation for NEW HOPE discusses with patients and citizens about the "ideal future" and "issues" regarding cutting-edge therapies, and disseminates the information widely.
https://www.innovation-for-newhope.com/

Astellas Pharma Inc., the operator of Innovation for NEW HOPE, co-sponsored the "Day of Intractable Diseases" symposium "Future Measures for Intractable Diseases from the Perspective of Patients and Citizens" organized by the Japan Health Policy Organization (supported by the Japan Council of Organizations for Intractable Diseases and Disease / ASrid, a non-profit organization).
Sanofi

  • Rare disease day RUN & WALK PROJECT

    Sanofi holds the RUN & WALK campaign every year in February around the time of Rare Disease Day. The event is open to anyone who downloads an app, and the amount of money raised in accordance with the cumulative distance covered by participants is donated to patient support organizations. Through these activities, we aim to deepen the public's understanding of rare diseases and create a society that is easier for patients and their families to live in.

  • Patient Story Book "Jyunin Jyunin" (Ten Colors of Patients)
    Sanofi's patient support service "Tetote" offers a storybook "Ten Persons, Ten Colors" that summarizes patients' journey from diagnosis to treatment and their current thoughts and feelings. The same information is also posted on the website "Lysolife" as "Voices of Patients and Their Families.
    We hope that this will help alleviate the sense of loneliness felt by patients and their families, who often feel isolated because of the rarity of the disease, by providing them with examples of other patients.
    The disease is the reason I have worked so hard to stay alive｜Lysosomal Disease Website Lysolife Fabry's Disease (lysolife.jp)
  • World Hemophilia Day
    Every year on World Hemophilia Day, April 17, Sanofi conducts activities to raise awareness of the rare disease and support patients with hemophilia. This year, a "special drone show" was held at the Meiji Jingu Gaien Softball Stadium. Some hemophilia patients are hesitant to take on new challenges because of the risk of bleeding. The drone show used 500 drones to depict cherry blossoms, symbolizing new beginnings, and a message of "Let the challenge bloom" to encourage not only hemophilia patients and their families, but also many others who are taking on new challenges this spring. The message "Let the challenge bloom" is also depicted on the "Cherry Blossom" pedestal.
Sumitomo Pharma
  • We have been supporting RDD Japan's activities since 2017, hoping to contribute not only to the provision of medicines but also to raising awareness of rare and intractable diseases. We also conduct activities to raise awareness of RDD by wearing the RDD badge.

  • Public Lectures for Citizens

    In FY2020-21, public lectures on Parkinson's disease, dementia with Lewy bodies, and diabetes were held mainly online. Starting in FY2021, we plan to conduct a needs, understanding, and satisfaction survey through questionnaires and reflect the results in the content of lectures in the following fiscal years and beyond.
Takeda Pharmaceutical Company Limited About the White Paper]
In December 2020, Takeda published a white paper, "Challenges of Rare Diseases in Japan: Toward the Co-Creation of an Ecosystem to Support Patients with Rare Diseases," which analyzes the challenges faced by patients with rare diseases and considers possible solutions. The white paper was prepared based on the opinions of domestic and international experts and a literature survey with the company's knowledgeable data. It includes an analysis of factors related to the various challenges faced by patients as they receive a correct diagnosis at a medical institution and proceed with treatment after developing a disease, as well as recommendations for improvement. With the release of this publication, the company has initiated discussions with a number of stakeholders to improve the suffering of patients and has also begun various collaborations, including the promotion of early diagnosis initiatives disease awareness.
https://www.takeda.co.jp/patients/rd-support/wp/

About TOMO, a patient support program
TOMO is a program in which dedicated case managers (qualified nurses) provide patients using MEDINET products with the support they need to continue treatment with peace of mind and live their lives to the fullest, via telephone and web-based interview tools. The program was initially launched for the Company's hemophilia A and hereditary angioedema (HAE) drugs, and is gradually expanding to cover more drugs as the Company works to contribute to patients.
Mitsubishi Tanabe Pharma Corporation
  • We sponsor RareDiseaseDay.
  • Patient groups, patients, and Mitsubishi Tanabe Pharma Corporation collaborated to hold a lecture by a patient for employees. By listening to the thoughts of patients and their activities to overcome diseases, and by having patients answer questions from employees, employees were able to gain an awareness of the patient perspective and reaffirm the social significance of their regular work.
Pfizer Inc.
Pfizer continues to support the "Pfizer Program: Citizen Activities and Research Support for Mental and Physical Health Care," a program that provides grants to non-profit organizations and other organizations that address issues in the field of health care. As an example of a project that is eligible for funding, Pfizer has decided to support the project "Research and Design for the Development of Self-Care Online Services for Living and Working with Intractable Diseases," which was submitted by the non-profit organization "Ryoyuiku World".
In addition, through support for the general incorporated association, the Association of Health Care Related Organization Networking (VHO-net), we have published a revised edition of "5 Articles of Peer Support "*, which is useful for activities by patients with intractable diseases.
*"VHO-net's 5 Articles of Peer Support" is a re-edited version of a booklet (published in 2015) created as a social contribution activity at Pfizer, following the signing of a collaboration agreement in the field of welfare and healthcare between the Tokyo Metropolitan Government and Pfizer Japan Inc. on December 26, 2022.
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