Pharmaceutical Industrial Policy Committee Disease Awareness/Education/Information for Patients
As of February 27, 2026
| Company name | Activities related to intractable and rare diseases |
|---|---|
| Astellas Pharma Inc. | Astellas is conducting research and development for the practical application of cellular medicine and gene therapy, which are new therapeutic tools that directly address the underlying causes of diseases for which there are still no effective treatments.
Astellas Open Forums are held for the general public to provide easy-to-understand explanations of cell medicine and gene therapy, as well as opportunities to engage in dialogue with patient groups and other stakeholders in the fields of intractable and rare diseases.
First Forum (October 2021): New Treatment Options for Patients: Evolving Regenerative and Cellular Medicine
2nd Forum (March 2022): New Treatment Options for Patients: How Cell Medicine Reaches Patients
3rd Forum (July 2022): New Treatment Options for Patients: Listening to the Voices of People Living with Intractable Diseases
4th Forum (November 2022): New Treatment Options for Patients: Understanding the Potential of Gene Therapy
5th Forum (April 2023): New Treatment Options for Patients: Challenges and Solutions for Realizing World-Leading Medical Care in Japan
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| Eisai | Chugai provides a paper-based symptom-checking notebook that incorporates the opinions of Parkinson's disease patients and physicians. In addition, Chugai provides the following information on the "Parkinson's Disease Symptoms and Progression (PD Net)*" website
Learn about the disease
(2) Public Assistance Programs
(3) Treatment and Medication
(4) Life style
(5) Patient's voice
This website supports patients' treatment by providing videos of rehabilitation and a downloadable "Symptom Notebook".
h ttps:// pdnet.eisai.jp |
| KAKEN Pharmaceutical | KAKEN Health Note, a website forpatients and the general public KAKEN Health Note " is a website for patients and the general public. The site aims to provide correct information about the body and health in an easy-to-understand manner. The site also includes information on hereditary angioedema ( HAE), a rare disease. What kind of disease is hereditary angioedema ( HAE)? About the Medical Expense Subsidy System Frequently asked questions ( Q&A) KAKEN will continue to provide information that is close to your body and mind so that you can lead your daily life with peace of mind and ease your anxiety by acquiring correct knowledge about HAE. Hereditary Angioedema (HAE) Information Site : |
| Kissei Pharmaceutical Co. | ■Disease awareness activities for patients/families through the disease information website "ANCA-related Vasculitis for Patients
Kissei has launched a website to help families of patients with ANCA-associated vasculitis, for whom early diagnosis and early treatment are important for prognosis, to become aware of the possibility of this disease and to receive appropriate diagnosis and treatment, and is operating the website by posting the following contents.
Provides correct information on ANCA-related vasculitis based on the supervision of medical specialists and interviews with medical specialists.
Patient testimonials are posted on the site.
To help patients/families find reliable medical institutions more smoothly, the site introduces specialized medical institutions and departments that can provide treatment through the "Ishamachi Hospital Search Service". |
| Kyowa Kirin Co. | Deepening disease awareness activities for patients/families through the disease information website "Kurukotsu Hiroba
We have launched a website "Kurutsubu Hiroba" to help undiagnosed rickets/osteomalacia patients and their families become aware of the possibility of this disease and receive appropriate diagnosis/treatment, and are operating the site by posting the following contents.
Providing correct information on rickets/osteomalacia under the supervision of medical specialists and posting interviews with medical specialists
Explanation of the medical subsidy system related to FGF23-related hypophosphatemic rickets/osteomalacia
Introduction of specialized medical institutions with experience in medical care through the "Ishamachi Hospital Search Service" so that patients/families can more smoothly find reliable medical institutions.
Patient stories" based on interviews with patients suffering from the disease
Establishment of "Patient-to-Patient Exchange" content for patients who have been diagnosed.
Since no patient associations exist, in addition to disseminating information and reports on public lectures jointly held by ASrid (Japanese name: ASrid)/Kyowa Kirin, a specified nonprofit corporation, we provide a place where patients can interact with each other. In addition, a "telephone consultation room" has been established as a new content in Kurukotsu Hiroba to listen to the concerns of patients through two-way communication by telephone with medical professionals, to make it easier to receive necessary information for individual patients, and to help patients who suspect a disease to connect with a medical specialist. We also help patients who suspect a disease to connect with a specialist. Public Lectures
Since there are no patient associations for rickets/osteomalacia, we continue to provide information to patients and their families by holding public lectures co-hosted by ASrid/Kyowa Kirin, a non-profit organization, showing videos of patients' appearances and providing medical information. |
| Sanofi | <Public Lectures ■Sanofi periodically holds "web-based public lectures" for patients and patients' families. In the lectures, patients share their own ideas and wisdom in daily life, and specialists provide information on government systems and other services with the aim of improving the quality of life of patients and those around them. Access to correct information for patients and their families is important for better medical care.
The "TETOTE no Madoguchi" service provides patients and their families with answers to their questions and concerns via telephone or e-mail by dedicated staff. The website "Lysolife" provides a variety of information useful for medical treatment, and support materials for patients and their families can be delivered by mail.
Teto Tete no Madoguchi (Teto Tete Window)
Lysosomal disease website, Lysolife (lysolife.jp)
URL: https: //www.lysolife.jp/tetote/
Web site "Lysolife
Information site on symptoms and treatment of lysosomal disease Lysolife (lysolife.jp) URL: https: //www.lysolife.jp/ |
| Shionogi | Shionogi introduces information on symptoms and treatments for idiopathic pulmonary fibrosis (IPF) and lipoatrophy, which are intractable and rare diseases, on its website. Idiopathic pulmonary fibrosis (IPF): http://www.shionogi.co.jp/IPF/ Lipoatrophy: https://wellness.shionogi.co.jp/shibouisyuku/patient.html |
| Sumitomo Pharma | We have established "Rehabilitation Kitchen for Parkinson's Disease Patients" and "Fabry's Disease Plaza" on our health information website for patients and the general public.
(1) Rehabilitation with the theme of cooking that can be done at home is introduced. The concept is that cooking while being aware of each movement will lead to rehabilitation for Parkinson's disease patients.
We also provide a downloadable symptom diary that allows patients to take notes on their daily symptoms and medications.
(2) Based on the contents of the "Fabry's Disease Handbook" prepared for patients, the handbook provides easy-to-understand information on the pathogenesis of Fabry's disease and the precautions to take in daily life.
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| Takeda Pharmaceutical Company Limited | Initiatives related to Rare Disease Day
We have been continuously sponsoring Rare Disease Day ("RDD") since 2014 in the hope of raising awareness and promoting understanding of this rare and intractable disease. In addition, the RDD Symposium is held in conjunction with RDD every February. The purpose of this symposium is to increase awareness of rare diseases, expand the circle of support for patients, and create a society that is easier to live in. In February 2024, the previous symposium was held under the theme of "Let's all learn about rare genetic diseases and communicate them correctly.
Symbiosis Canvas
With the aim of "using issues related to rare and intractable diseases as an opportunity to encourage people to think about creating a society in which all people can shine," every year we conduct face-to-face or online classes on intractable and rare diseases by our employees for junior high school students nationwide (about 10 schools). Through these activities, we believe we can contribute to the creation of a healthy society and a society in which all people can shine together.
IBDream Confectionery Pictorial Book】 【IBDream Confectionery Pictorial Book
As part of the "IBDream Project" activities to address the concerns of inflammatory bowel disease (IBD) patients and work with various companies and organizations to find solutions, we have released the "IBDream Confectionery Pictorial Book" to support IBD patients in selecting confectionery, with the cooperation of eight confectionery companies.
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| Mitsubishi Tanabe Pharma Corporation |
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| Chugai Pharmaceutical Co. |
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| Pfizer Inc. |
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