『ヘモフィリアを語る』の英語PDF版”Talk about Hemophilia”を公開
今年の世界ヘモフィリア・デー（4月17日）を機に、『ヘモフィリアを語る』の英語PDF版”Talk about Hemophilia”を公開しました。下段ページより、無償ダウンロードが可能です。
これまでも様々な機会に全国ネットワークの活動に協力して下さった小林まさみさんの翻訳、そしてムック版を手がけていただいた山本貴緒さんの編集、大橋マホさんのデザインによるものです。
英語で読んでいただける方、海外の関係者の方などに紹介、配布していただければ幸いです。
To the National Member Organizations
World Federation of Hemophilia
April 17, 2023
It is my great pleasure on World Hemophilia Day to introduce the new book published by the National Hemophilia Network of Japan, Talk about Hemophilia. This is the authentic voice of Japanese people with hemophilia who for the first time are sharing their experiences, both past and present, and their vision of the future. The participants include young people, people who worked for pharmaceutical companies, parents, doctors, and nurses.
The topics covered are universal: “Hemophilia and Disability, Illness or Wellness “, “Hemophilia Clinical Practice Front Line – Challenges and Prospects”, “Possibility and Challenges Of Gene Therapy”, “Women and Genetic Carriers of Today In the Hemophilia Community”, “Hemophilia and the Pharmaceutical Industry”, “History and Practice of Hemophilia Nursing”, “Patient Associations – Role and Development”, and “Lessons Learned in the Tragic History of Hemophilia Care”.
We hope that you will read and enjoy this book that many people put heart and soul into. Through it, we believe that you will get a glimpse of how Japan’s hemophilia community has met the challenges that the entire global community faced, as well as what is in store for the next generation.
Sincerely,
Takeshi Matsumoto
President, National Hemophilia Network of Japan
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