We want to provide you with what you wish you had.
ZENPE is run by people with a disease and their parents.
We support everyone so that they can obtain correct information, and at the same time aim to be a place to connect with people with a disease from an early stage so that as their children grow up, they do not feel isolated because they have no friends with the same disease.
We offer something that "we wish existed" from the perspectives of both people with a disease and their parents.
mission
Know your illness, know yourself. We are a group that helps people create the "ideal self" they want to be.
This illness varies greatly from person to person, so it is important to "create your own instruction manual." Disabilities are not something to overcome, but something to live with for the rest of your life. That is why each person should be true to themselves, with what they were born with. Live the best life possible!
That is the idea behind our activities.
Approach
Parents・Patients親・当事者
We support people in acquiring correct knowledge and at the same time create a forum for exchanging various information.
We utilize the perspectives of both parents and people involved to provide what people wish they had.
Kids子供
We aim to establish connections early on and provide a place for children with the condition to belong, so that as they grow up, they do not feel isolated because they have no friends with the same condition.
Hospital医療機関
In cooperation with medical institutions, we will build a database of patient families and conduct research to help with treatment.
We also cooperate in clinical trials and work to seek domestic approval for treatment drugs.
Various Institutions各種機関
We will raise awareness and disseminate information to raise awareness of this disease, which is not well known.
We will also make requests and recommendations to various institutions to help patients and their families live better lives.
Business Contents
Contents List
We take a stylish approach to welfare and disability issues, which can often be difficult.
Run by creators such as designers, photographers, and food space producers, along with professionals such as nurses who are people with illnesses and their parents, the site leverages its strengths to transform disability and welfare issues, which can often be complicated, into something fashionable.
Because these are illnesses with a small number of patients and low awareness, the site aims to appeal to society by providing easy-to-understand information.
The site strives to create content that can be enjoyed by people with or without disabilities, with the aim of creating an inclusive society.
vision
ZENPE is run by people with disabilities and their parents who are various creators, such as designers, photographers and illustrators, and they use this strength to turn what can often be difficult issues of disabilities and welfare into something stylish.
Because it is a disease with a small number of patients and low awareness, we aim to appeal to society by disseminating information in an easy-to-understand manner.
We work to manage content that can be enjoyed by people with and without disabilities, aiming for an inclusive society.
information情報提供
While there is little information available and many of the articles written for doctors are difficult to find online, ZENPE has a consulting doctor who is a leading researcher and doctor on this disease supervise the article, and provides easy-to-understand explanations of not only this disease but also hearing loss. We also provide the latest medical information, such as interviews with doctors and information on clinical trials.
Collaborate関係機関と連携
In order to help patients and their families live better lives, we work with government, educational, and medical institutions to provide appropriate support and information, and also cooperate with medical institutions in conducting research such as clinical trials.
communityコミュニティーの構築
We provide a place where people with the small number of patients can connect with each other, and a forum for exchanging various information through face-to-face events, members-only online social gatherings, and open chats.
artアート体験の提供
We offer art experiences and workshops that allow people to feel close to art, such as photography, painting, and dance, and experience self-expression without relying on language, and that allow hearing aids and cochlear implants to become "one of your charms."
public relations広報・啓蒙活動
We will disseminate information and engage in public relations activities to bridge the gap in medical care between regions and to enable those affected and their families to make choices and live their lives in a way that suits them with peace of mind. We also aim to disseminate information and raise awareness so that those who have not yet been diagnosed with the disease but are suffering from symptoms can receive a proper diagnosis.
Doctor
Doctors who are at the forefront of examining and researching enlarged vestibular aqueduct and Pendred syndrome will oversee medical information as consulting physicians for ZENPE.
Chief Advisory Physician
Tatsuo Matsunaga
- National Hospital Organization Tokyo Medical Center
- Clinical Research Center, Head of the Hearing and Balance Research Department
- Director of the Clinical Genetics Center
After training and working as an otolaryngologist, I now specialize in the treatment of hearing loss in children and adults.
I also work with medical facilities across the country to conduct research into genetic, intractable, and rare otolaryngological diseases.
Since first diagnosing enlarged vestibular aqueduct/Pendred syndrome in 1999, I have been conducting medical treatment and research into this disease on various fronts.
I hope to be of service to patients and their families in any way I can.
Advisory Physician
Masato Fujioka
- Professor of Molecular Genetics, Kitasato University School of Medicine
- Otolaryngology (concurrent), Kitasato Institute Hospital, Kitasato University
- Visiting Professor, Regenerative Medicine Research Center, Keio University
While working in hearing loss treatment and hearing improvement surgery, I have made research into the development of treatments for hearing loss my life's work, and have been involved in translational research ranging from iPS cell research to animal experiments (mice and monkeys) and clinical trials for patients. I have also examined many patients with Pendred syndrome.
I hope to be of use to you all, focusing on disseminating scientific and medical information.
Advisory Physician
Yukiko Seto
- Toho University Omori Hospital, Otolaryngology, Associate Resident, Pediatric Hearing Loss Clinic
- Seitoku University, Faculty of Education, Part-time Lecturer
I am in charge of general ENT consultations and pediatric hearing loss outpatient care. After my own experience after giving birth, I realized how grateful I was to be able to receive medical treatment within my own living area, so I opened a pediatric hearing loss outpatient clinic at Toho University Hospital. When I talk to patients and their families during my consultations, there are many times when I think, "I wish more people in the world knew about hearing loss," and I feel the need for educational activities every day. I believe that it is an important role to inform aspiring educators about hearing impairments, so I am also working hard on educational activities. I hope to be of some help, even if it is just a small contribution.
MEMBER
ZENPE is an organization run by people with enlarged vestibular aqueduct and Pendred syndrome and their parents. We value the perspectives of both people with and their parents and provide what they wish existed.
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代表
大島 美和
- 2022年生まれの娘
が前庭水管拡大症 - 元デザイナーで
フリーカメラマン
- 2022年生まれの娘
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副代表
- ペンドレッド症候群当事者
- 聴力:左60〜65dB 右90〜95dB
- 看護師
-
理事
- ペンドレッド症候群当事者
- 聴力:左右85dB
- WEB・DTPデザイン
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監事
竹原 綾子
- 成人した息子が前庭水管拡大症
- 食空間プロデューサー