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Home » May 23rd is “Intractable Disease Day”, 10 years since the enactment of the Intractable Diseases Act; Alexion Pharma sponsors the “Intractable Disease Day” symposium

May 23rd is “Intractable Disease Day”, 10 years since the enactment of the Intractable Diseases Act; Alexion Pharma sponsors the “Intractable Disease Day” symposium

Alexion Pharma LLC
May 23rd is “Intractable Disease Day”, 10 years since the enactment of the Intractable Diseases Act; Alexion Pharma sponsors the “Intractable Disease Day” symposium
– The first incurable disease project by the Japan Health Policy Institute (HGPI) –
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Alexion Pharma LLC (Headquarters: Minato-ku, Tokyo; President: Kimihiro Kasamo; hereinafter referred to as Alexion Pharma) is a pharmaceutical company specializing in intractable and rare
diseases.On May 23, 2019, we will mark the 10th anniversary of the enactment of the Intractable Diseases Act. On Intractable Disease Day, the Japan Health Policy Institute (HGPI), a non-profit, independent think tank, will hold the first intractable disease countermeasure project, “Intractable Disease Day” symposium, “Future countermeasures for intractable diseases from the perspective of patients and citizens. We support “.
What is “Intractable Disease Day”?
To commemorate the enactment of the “Act on Medical Care for Patients with Intractable Diseases (Intractable Diseases Act)” on May 23, 2014, the Japan Association for Intractable Diseases and Disease
Associations (JPA) established the Act on May 23, 2018. has been registered as “Intractable Disease Day.” JPA Representative Director Yuichi Yoshikawa said, “The enactment of the Intractable Diseases Act was a major turning point in Japan’s countermeasures against intractable diseases. We have registered this day as “Intractable Disease Day.” It is said that intractable diseases occur in a certain percentage of the population, so we hope that this day will be a day to remember people with intractable diseases. ”.
Ten years have passed since the enactment of the Intractable Diseases Act, and the number of designated intractable diseases has increased to 341, and various measures have been implemented.
In addition, the law will be revised for the first time in 2023, including reviewing the start date of medical expense subsidies, establishing a business to issue registrant certificates, and legalizing an incurable disease database.
Sponsoring the “Intractable Diseases Day” symposium sponsored by the Japan Health Policy Institute (HGPI)
Kimihiro Kasashige, President of Alexion Pharma, said: “The purpose of the symposium sponsored by HGPI is to bring together many stakeholders on “Intractable Disease Day” to discuss various issues surrounding intractable diseases, such as early diagnosis, medical cooperation, and promoting social understanding of diseases. It is very meaningful for us to be able to support and sponsor this symposium.We hope that this symposium will deepen our understanding of the issues faced by patients with incurable diseases and their families, and lead to a better society.”
Shunichiro Kurita, senior manager at the Japan Health Policy Institute (HGPI), which is hosting this symposium, said, “The “Intractable Disease Day” symposium will be the organization’s first forum for discussion on intractable diseases. Based on our organization’s mission of “realizing the effects of disease,” we aim to organize future issues through discussions among multiple stakeholders, including patients and those affected, regarding the future of incurable disease countermeasures, and to widely disseminate these to society. ”.
Event overview
[Name] Japan Health Policy Institute (HGPI) Intractable Disease Control Project       “Intractable Disease Day” Symposium “Future measures against intractable diseases from the perspective of patients and citizens” [Date and time] May 23, 2024 (Thursday) 15:00-17:00 (doors open at 14:45) [Holding method] Hybrid event using venue and Zoom webinar
    ※Pre-registration required, lottery will be held if there are many applications to participate at the venue
[Location] Otemachi Financial City Grand Cube 3rd floor (1-9-2 Otemachi, Chiyoda-ku, Tokyo)
[How to apply for participation] -HGPI application site
https://hgpi.org/events/id-20240523.html-
[Participation fee] Free
[Sponsor] Japan Health Policy Institute (HGPI)
【Speakers】
Mr. Kunio Tsuji, Managing Director, Japan Association for Intractable Diseases and Illness Organizations, General Incorporated Association Yukiko Nishimura, Chairperson of ASrid, a specified non-profit organization Mr. Masaaki Yokota, Assistant Director, Intractable Disease Control Division, Health and Environmental Hygiene Bureau, Ministry of Health, Labor and Welfare
Mr. Yuiyoshi Nakajima, Researcher, Drug Discovery Division, Japan Agency for Medical Research and Development (AMED)
Ms. Shizuko Tsushima, Director, Cancer and Disease Control Division, Health and Medical Department, Kanagawa Prefectural Health Bureau Mr. Atsushi Furyu, Osaka University Graduate School of Medicine [Sponsored by] Japan Association for Intractable Diseases and Disease Associations (JPA) / ASrid, a non-profit organization
[Sponsor] Astellas Pharma Co., Ltd./JCR Pharma Co., Ltd./Alexion Pharma LLC that’s all
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About the Japan Association for Intractable Diseases and Disease Associations (JPA)
It is a national organization of 100 patient organizations and approximately 200,000 members and associate members of adults and children with intractable and long-term chronic diseases. With the slogan “To realize a society where people can live with dignity and peace of mind in the community even if they become ill,” he serves as a member of several government committees related to intractable diseases, people with disabilities, and medical care. We host and co-sponsor events such as “Intractable Disease Day” and “National Forum on Intractable and Chronic Diseases,” and take on the challenge of tackling intractable disease issues that are difficult for individual patient associations or prefectural intractable disease associations to tackle.
About the Japan Health Policy Institute (HGPI)
The Japan Health Policy Institute (HGPI) was established in 2004 and is a non-profit, independent, non-partisan policy think tank that aims to “achieve citizen-centered health care policy.” In addition to addressing traditional medical policy issues such as infectious and non-communicable diseases, we also focus on a wide range of social issues that go beyond the traditional medical policy framework, such as women’s health, children’s health, and planetary health. The aim is to present policy options from civil society.
About Alexion Pharma LLC
Alexion Pharma LLC is the Japanese subsidiary of AstraZeneca’s rare disease division Alexion AstraZeneca Rare Diseases (Headquarters: Boston, USA), which discovers, develops and provides life-changing treatments for patients. Through our efforts, we are committed to serving patients with rare and serious conditions and their families. A pioneering leader in rare diseases for more than 30 years, Alexion was the first company to harness the complex mechanisms of the complement system to create innovative treatments and continues to address many unmet needs. In the disease field, we are building a diverse pipeline based on various innovations. As part of AstraZeneca, we continue to expand our global reach to bring treatments to more patients with rare diseases around the world.
For more information about Alexion Pharma LLC, please visit
https://www.alexionpharma.jp/, and for information on its
sustainability activities in Japan, please visit
https://alexionpharma.jp/sustainability. For YouTube, please visit https://www.youtube.com/@alexionpharma_japan.
About AstraZeneca
AstraZeneca is a science-oriented global biopharmaceutical company that focuses on drug discovery for ethical drugs in the
biopharmaceutical field, which mainly includes oncology, rare disease, cardiovascular, renal, and metabolic diseases, and respiratory and immunological diseases. , engaged in development, manufacturing, and marketing/sales activities. Based in Cambridge, UK, we operate in more than 100 countries and our innovative medicines are used by millions of patients around the world. For more information, please visit https://www.astrazeneca.com or follow us on social media @AstraZeneca. More details about this release:
https://prtimes.jp/main/html/rd/p/000000013.000074822.html



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