Industry Policy Committee Disease awareness/education/information for patients

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

The company offers a paper-based symptom identification notebook that incorporates the opinions of Parkinson's disease patients and physicians. In addition, the following information is provided on the "Parkinson's Disease Symptoms and Progression (PD Net)*" website

(1) Learn about the disease

2) Public support system

(3) Treatment and medications

(4) How to live with Parkinson's disease

(5) Patients' voices

This website supports patients' treatment by providing videos of rehabilitation and a downloadable "Symptom Notebook".

h ttps:// pdnet.eisai.jp

We have launched a website to make families of patients with ANCA-related vasculitis, for whom early diagnosis and early treatment are important for prognosis, aware of the possibility of this disease and to support them in receiving appropriate diagnosis and treatment, and are operating the website through 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".

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.

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)

Web site "Lysolife

Information site on symptoms and treatment of lysosomal disease Lysolife (lysolife.jp)
URL: https: //www.lysolife.jp/

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.

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. The previous symposium was held in February 2024 under the theme of "Let's All Know and Communicate Rare Genetic Diseases Correctly.

 

Every year, our employees conduct in-person or online classes on intractable and rare diseases for junior high school students nationwide (about 10 schools) with the aim of "encouraging them to think about creating a society in which all people can shine together, using issues related to rare and intractable diseases as a starting point. 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.

 

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.