Partnership & Sponsorship

The World Congress on Rett syndrome to be held in Russia for the 1st time on May 13-17, 2016 in Kazan

Congress is aimed for the scientists and specialists - doctors, psychologists, teachers, nurses, and most importantly - for the families of people with Rett syndrome and other rare genetic diseases. Arrival of the participants from the subjects of the Russian Federation as well as guests from abroad is expected. It is estimated to hold about 10 round tables, four scientific sessions and symposia, parental school and exhibition.

We offer you favorable conditions for financing the Congress: You will demonstrate both: the power and consistency of your business, and take part in a big charity event.

The money is needed to pay for the rental of premises and equipment, including equipment for simultaneous translation, to provide daily video shooting of performances of the speakers of the Congress, to pay for the travel and accommodation of unique scientists and experts (from the US, Australia, Japan and Europe). Detailed information can be provided at the meeting.

The initiator of the Congress is Association for Rett syndrome patients, registered in Kazan in 2011, but started its operations earlier. First it was 2, then 3 children, in 2011, we helped 27 children. Currently there are 166 families with children with this rare genetic disorder in the Association.

The main activities of the Association are related to awareness of the syndrome and its studies on the diagnosis and rehabilitation in children. The problems that we are helping to solve, connected primarily with delayed diagnosis and difficult access in its implementation; informing parents and professionals on methods of treatment, rehabilitation and education of children with Rett syndrome; with psychological problems appearing in the family at every stage of development of the child; a manifestation of understanding and being friendly to this child and his family during adolescence.

We cooperate and help children and their families outside the Russian Federation as well. Armenia, Belarus, Ukraine, Tajikistan, Uzbekistan, Kazakhstan, Moldova are in touch with us as there are no such national organizations for Rett syndrome patients. Our Association is a member of the international Rett community. Our partner organizations are located in the United States, United Europe, Australia, and Japan. The site of the Association is being browsed in 81 subjects of the Russian Federation and in 107 countries.

Conduction of the Congress is agreed by the Ministry of Health, supported by the Public Chamber of the Russian Federation and by the Russian Foreign Ministry.

Conduction of the Congress is agreed by the Ministry of Health, supported by the Public Chamber of the Russian Federation and by the Russian Foreign Ministry.

Contacts

Phone: 0079219050175

E-mail: angelrettru@gmail.com


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The organizers of the Congress

With support of the President of the Republic of Tatarstan RN Minnikhanov president.tatarstan.ru.


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Guests of the Congress

Representatives of the Federation Council and the State Duma of the Federal Assembly of the Russian Federation, members of the Public Chamber of the Russian Federation, specialists of relevant ministries, and representatives of patient organizations, scientists and experts, international organizations, parents of children with Rett syndrome, all interested citizens are invited to the congress.


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