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06.05.2016. VIII World Rett Syndrome Congress Agenda Kazan, Russia, 13-17 May 2016
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28.03.2016. VIII World Rett Syndrome Congress Kazan, Russia, 13-17 May 2016, «Riviera» Hotel
Rett Syndrome Association invites you to participate! The
01.12.2015. The regular meeting of the organizing committee of the World Congress on Rett syndrome was held on November 30, 2015
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15.07.2015. The new meeting of the Organizing Committee of the World Congress on Rett syndrome took place on July 10th, 2015.
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Dear friends!

Setting up the "Rett syndrome association" in Russia became possible after the famous Russian tennis player Vera Zvonareva started talking about it.

On February 1, 2011 the Association was registered!

The association was created for the purpose of assistance to carrying out research on problems of diagnostics and rehabilitation of RS; rendering of information and advisory services and help to families with RS people, and also to institutions which promote medical and pedagogical scientific research of the syndrome and assist people with RS and their families.



Marathon in Kazan

May 11, 2015 on the area of the Kazan Arena stadium in Kazan the athletics marathon started. All those who run the 42.195 km and 21.097 km marathon ran through the most beautiful streets of the capital of Tatarstan. This marathon was held in a modern format of the show and the pleasure of running for all. Another distance for those who wanted to take part in the marathon was 5 km.

Within the 5-kilometer distance athletes ran in support of children with Rett syndrome. It is Important that the support group included students, alumni and teachers of KSMU, headed by the rector A. S. Sozinov; students of Architecture and Construction University, leaders and members of social organizations as Union of patients and patient organizations on rare diseases (Moscow), CF "Window to Hope", ICPO «Society of disabled people suffering from Hunter syndrome", members of the Civic Chamber of the Republic of Tatarstan.

At the awards ceremony on the results of the 5-km run the Rector of KSMU, Chairman of the Organizing Committee of the Congress on Rett syndrome A.S. Sozinov said:"I want to draw your attention to the action inside the action. Kazan Medical University ran today in support of children with rare diseases. Exactly one year later Kazan will host the World Congress on Rett syndrome. Such children are few, but they are waiting for our help. Please note - these children are now also the winners! Please support our action, and you will support children with Rett syndrome!"

Bright yellow and purple balloons flew in the sky at the finish, as a symbol of organizations supporting people with rare diseases, and the winners were greeted with medals of the Marathon and flags of the Association of Rett syndrome.


Вера Звонарева в акции Взнос солнечному ангелуFounder of the Rett syndrome Association Vera Zvonareva starts a campaign "SunAngelDonate" to raise funds.

WebMoney:
WMR R296700204467 
WMZ Z174073666828
WME E307621810692


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Us dollars bank account

Intermediary
SWIFT IRVTUS3N
THE BANK OF NEW YORK
NEW YORK

ACCOUNT WITH
SWIFT SABRRUMMNA1

INSTITUTION
SBERBANK
(VOLGO-VYATSKY OFFICE)
NIZNIY NOVGOROD, RU

TO BENEFICIARY'S ACCOUNT
40703840262021000110

BENEFICIARY CUSTOMER
Аutonomic noncommercial organization «Association of assistance to Rett syndrome patients»

KAZAN RUSSIA
Euro bank account

Intermediary
SWIFT DEUTDEFF
DEUTSCHE Bank AG

ACOUNT WITH SWIFT
SABRRUMMNA1

INSTITUTION
SBERBANK
(VOLGO-VYATSKY OFFICE)
NIZNIY NOVGOROD, RU

TO BENEFICIARY'S ACCOUNT
40703840262021000111

BENEFICIARY CUSTOMER
Аutonomic noncommercial organization «Association of assistance to Rett syndrome patients»

KAZAN RUSSIA


Questions and Answers.

How old is your association? Organization is registered 1 February 2011.

How many families are in your association? - due to the work we became aware of 104 children with Rett syndrome,living in Russia; - parents, 45 children have agreed to provide information about their children.

How does the association keep in touch with families?
Through a common website. Every year Association organizes school for parents or conference.

How are families who need help given support?
13 children were funded diagnosis of Rett syndrome in 2012.

What is the financial situation of your association?
Budget association formed of charitable donations of individuals and entities

How are funds raised?
Funds formed of charitable donations of individuals and entities.

What activities are provided by the association for members?
School for parents children who haves Rett syndrome 15 th. September 2012. Conference by Rett Syndrome with international participation 16-17 September 2011. <> (Parent). Round table on <> 21 February 2012.

How is the association involved in research?
Association initiated study of 12 cases (girls) by molecular studies of chromosome abnormalities (array CGH), preparing reports and publications.

What are the highlights of the year for your association?
2011 - creation of associations and Conference by Rett Syndrome with international participation 16-17 September 2011.
Our association member, Rett Syndrome EuropeRSE: http://www.rettsyndrome.eu/
More resources about a Rett syndrome in English:

http://worldcongress.rettsyndrome.org
http://www.rettsyndrome.org

http://www.rsrt.org

 

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