You are not alone, you have friends.
A source of comfort for the families of patients suffering from illness.
By joining ZENPE, you can meet other patient families with the same disease and obtain a variety of information, such as the latest medical information on clinical trials, welfare information, and ideas for everyday life.
Because this is a disease with a small number of patients, we believe that by coming together as members, small voices can become louder and we can raise awareness of the existence of this little-known disease in society.
ZENPE Member
¥5,000/year
Patients, families, general (individuals)
Reviews会員の声
S.M
Person with disease, woman in her 20s
It's been 14 years since I was diagnosed, but when I joined this group, it was the first time I'd met someone with the same condition. It's not just hearing loss, it's also a condition that causes dizziness and severe fluctuations in hearing, so it was hard for me to confide my worries to those around me, but in the open chat we had fun talking about the common issues that only a person with the condition can have, and it made me feel lighter knowing that I'm not the only one.
O.Y
Father in his 40s
After my child was diagnosed with enlarged vestibular aqueduct, I had little knowledge and was full of anxiety, but learning from the experiences of other parents at ZENPE has been very helpful in coming up with ideas for daily care and sorting out my feelings.
Thanks to that, I've been able to face the situation in a positive way.
I'm very grateful for the support and emotional encouragement I've received as my child grows.
O.M
Person with disease: Male in his 60s
After being diagnosed with Enlarged Vestibular Aqueduct, there was almost no information available about the disease, so when I searched the internet, I found out about the Enlarged Vestibular Aqueduct/Pendred Syndrome Society (ZENPE), and the information they provided was very helpful and I learned a lot. By applying the various symptoms they have given me to myself, I have been able to prepare myself mentally for the symptoms and try to make them as mild as possible.
F.M
Person with disease, male in his 40s
I joined this society after being introduced to it by my doctor who is researching this disease. I thought I knew the most about my disease, but listening to the stories of people with the same disease made me realize that my understanding was shallower than I thought. I hope to study here and be able to live with my disease in the future.
membershipこんな患者家族会です
EVENT仲間を見つけられる
There are moments of mutual understanding between people with the same disease.
We plan and provide a variety of events, including face-to-face social gatherings, workshops, and online tea parties. Patient families can easily exchange information with each other through member-only open chats and regularly held Zoom tea parties.
Medical Care治験や最新医療情報を提供
Turning "difficult" into "easy."
Make disease information easy to understand.
While there is little information available and many difficult-to-find papers on the Internet, ZENPE provides medical supervision by Dr. Matsunaga, a leading researcher in Pendred syndrome, to provide easy-to-understand information on the disease. We also provide the latest medical information, such as clinical trials.
ExclusiveZENPEマガジン購読
ZENPE.mag is a members-only web media.
All the information you want to know.
The column provides advice and measures for school and daily life from a patient's perspective. Because the number of patients is small, the column delivers "real voices" through personal stories and interviews.
merit入会のメリット
ZENPE is an NPO run by people with enlarged vestibular aqueduct and Pendred syndrome and their parents.
We aim to support parents and people with the condition so that they can obtain correct information, and to be a source of emotional support for their children when they grow up, so that they do not feel isolated because they have no friends with the same condition.
We carry out activities that are close to everyone, drawing on the experiences of both people with the condition and their parents who felt that "it would have been nice if this kind of information or service existed."
Five Membership Benefits
Membership-based web magazine ZENPE.mag subscription
You can read a wide range of members-only articles, including personal stories from people with the disease and their parents, and information on ear-related subsidies.
Open chat for patient families only
You can use the open chat to casually exchange information, such as concerns unique to people with the same disease or parents, and tips for dealing with seizures.
Useful data download free
We will be gradually distributing useful data that can be downloaded, such as disease explanation materials, pamphlets, and awareness-raising materials.
Advance release of clinical trial information by consulting physicians
You can obtain accurate knowledge supervised by consulting physicians who are at the forefront of examining and researching this disease. We also provide the latest medical information such as clinical trials.
Participate in paid events at member prices
We also hold offline social events such as regular ZOOM tea parties and workshops. You can participate in certain paid events at a member price.
merit入会のメリット
Exclusive会員専用
You can read articles for members only, such as stories and interviews by experienced people and parents.
Make Friends情報交換
You can use the open chat where members can easily exchange information with each other.
Medical Care医療情報
Under the supervision of a consulting physician who is a leading researcher and diagnoses this disease, you can obtain cutting-edge medical information, such as information on clinical trials.
EVENTイベント
You can participate in our regularly held ZOOM tea parties, lectures, seminars, and social gatherings.
Downloadダウンロードサービス
You can participate in our regularly held ZOOM tea parties, lectures, seminars, and social gatherings.
JoinusZENPE会員になる
ZENPE operates through membership fees and donations from our members. These are used for website management, pamphlet production, interviews, event expenses, etc. We will use them wisely so that we can be a source of emotional support for patients and their families.
ZENPE Member
¥5,000/year
Patients, families, general (individuals)
*Membership is mainly made up of patients and their families who agree with and support the purpose of ZENPE's activities, but anyone from the general public can join.
*Only patient families can use the open chat.
*No voting rights.
*For companies, information on supporting corporate members can be found on the donation page.
Notes注意事項
Payment
・You will be able to use the member content from the moment your first payment is processed. (Due to system reasons, this may take up to 24 hours.)
From the following year onwards, payment will automatically be charged on the same day unless you cancel.
・You can cancel at any time, but there are no refunds or pro rata refunds.
・Please note that once you cancel your subscription, your service will end and you will no longer be able to view member content.