There are two ways to support us: "Donation" and "Supporting Corporate Membership"
ZENPE operates through donations. We need your support to continue our activities. We appreciate your kind support in the current difficult social situation.
donationご寄付
Every moment of support can be a great emotional boost to someone. Why not join the supporters of patients and their families by making a donation? Your support will help us continue to hold consultations and provide information, bringing smiles to the faces of patients and their families. We will also publish your name as a token of our appreciation.
Corp Membership賛助企業会員
If your company agrees, we will post your logo and website, and widely publicize your company's efforts to contribute to society. Your support will help us to further advance our activities. We look forward to your participation.
Notes regarding supporting corporate members
- Regarding payments: From the following month onwards, payments will be automatically charged on the same day unless you cancel.
- Cancellation: You can cancel at any time, but there will be no refunds or pro rata refunds.
Problem当疾患の課題
10,000-20,000
It is difficult to meet others with the same disease.
This is no surprise, as it is said that there are 4,000 people with Pendred syndrome nationwide. The disease not only affects the individual, but also their family and the surrounding environment. Although the individual symptoms are diverse, people with Pendred syndrome often share the anxiety and loneliness they experience.
0
Currently, both enlarged vestibular aqueduct and Pendred syndrome are intractable diseases for which no fundamental treatment has been established, and no medications are available for use.
In addition to the unfortunate condition of a disease with a small number of patients, there are various hurdles to overcome in obtaining domestic approval for new drugs. Therefore, it is essential to seek domestic approval for treatment drugs, cooperate with medical and treatment research institutions, and lobby various organizations.
Little
With the nationwide introduction of newborn hearing screening tests, hearing impairments can now be detected in the newborn period and babies can be connected to medical institutions at an early stage.
As a result, the number of patients diagnosed with enlarged vestibular aqueduct and Pendred syndrome is on the rise, but awareness of the disease is low, and even if you search for information online, most of the content is difficult for amateurs to understand, such as in papers aimed at doctors.
Non
This disease is a "progressive" hearing loss, and is an intractable disease with no established treatment, but currently, neither Enlarged Vestibular Aqueduct nor Pendred Syndrome has been designated as a designated intractable disease. In addition, some patients do not even have a disability certificate due to the degree of their hearing loss. However, depending on the severity of the attacks, repeated hospital visits and hospitalizations can result in mounting medical expenses, so it is essential to raise awareness, make proposals, and make requests to various institutions with the aim of having this disease designated as an intractable disease.
Visionビジョン
The future ZENPE aims for.
Aiming to solve problems and make everyday life easier for patients and their families.
Domestic approval of therapeutic drugs
We cooperate with medical and clinical trial institutions in seeking domestic approval for therapeutic drugs, and also make requests and suggestions to various institutions.
Designated intractable disease
We will work with medical institutions to have this condition designated as an intractable disease, and aim to reduce the medical expenses burden on patients with this condition.
Patient database construction
We work with medical institutions to build a patient database to help with treatment and research.
Certified NPO
We aim to become a certified NPO with greater social credibility and will continue to expand the scope of our activities in order to raise awareness of this disease.
Building a medical network
We will build a network with hospitals across the country that specialize in this disease, thereby bridging the medical disparities between regions.
Connecting with the world
We will connect with people with this disease around the world, share information, and use it to improve treatment and research. We will also establish an International ZENPE Day to raise awareness and promote the disease.
Supporterサポーター紹介
Logos/websites of individuals and companies who have supported us
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