About Us // About

Program

The Children SMA Foundation unites people with the general interests, namely parents of children with the Spinal Muscular Atrophy. It is for this reason in the further activity we shall welcome ideas of other parents, their programs, various therapies, etc. which were applied personally and have been recognized effective. This exchange of ideas enables to solve, even partially, the existing problems.

Children SMA was created not as the organization supporting or subsidizing any specific treatment or therapy. The information containing on a site is intended only for the information and educational purposes. All presented medical information should be discussed with the qualified doctor.

Copyrights

At supporting of the information site Children SMA reserves the right to delete any undesirable registration at a forum. The site does not support any advertising projects and an exchange of banners.

Any reference containing on this Information site is stipulated only for convenience of acquaintance with the information. The Children SMA has no attitude to the published information and cannot officially confirm it. If another is not specified Children SMA has the author’s rights, but the information containing on Children SMA site can be used for you personally.

Confidentiality

By placing information about you, your child in the sections, you agree to use all published material for purposes that do not contradict the activities of the Foundation. The material can be edited, used in part. The images published here are accepted on the same usage rights.
We can collect e-mail addresses of those who contact with us through e-mail, to unite the information concerning access to separate pages of our Information site. The information which we collect, can be used for improvement of the maintenance of our Information site, maintenance you by updating concerning research jobs, news. СSМА protects the personal rights of members and those who addresses to СSМА in granting of the information on. All received information is anonymous and cannot be transferred or shared to the third parties for use without the personal permission.

Financing

CSMA, the Foundation Children with spinal muscular atrophy, is dedicated to improving the quality of life of all people living with rare diseases namely SMA in Ukraine. CSMA receives no government funding. By making a donation, you will help empower the research and care, advocate for SMA patients at national and European levels.

Disclaimer

Children SMA can changes this Statement or any other information containing on our Information site at any time. It is your responsibility to apprise yourself of the most current disclaimer/information. You can Receive the Membership Children SMA.

Registration certificate

Certificate

Свидетельство о регистрации №14801200000004348, решение Исполкома Харьковского горсовета от 25.11.04

Почтовый адрес: ул. Гоголя, 7, Харьков, Украина, 61057

Повна назва Фонду українською мовою: Харківський Благодійний Фонд “Діти зі спінальною м’язовою атрофією”. Скорочена назва Фонду українською мовою: ХБФ “Діти зі спінальною м’язовою атрофією”. Повна назва Фонду англійською мовою: Кharkiv Charitable Foundation “Children with Spinal Muscular Atrophy”.