Worldwide Faces of Rett Syndrome: Russia May 2016 World Congress

January 8, 2016

In May 2016 Kazan, Russia will be hosting the World Congress on Rett syndrome. This unique event will bring together experts, scientists, parents and public representatives and is hosted by the Russian Rett Syndrome Association and supported by Rettsyndrome.org and Rett Syndrome Europe.

We asked Olga Timutsa, one of the founders of the Russian Rett Syndrome Association to share her story about why she started the association and why they are hosting the Congress in Russia.

My daughter Kate was 2 years old when the doctors from Moscow diagnosed her with "Rett syndrome". At that time there was very little information in Russian, my family and I were looking for articles about Rett syndrome, they were all in English, and we had to translate them to learn more about life of the children with Rett syndrome. It was not easy because there was not enough information, there was neither registry of families nor the parent organization in Russia. I have been to international conferences on Rett syndrome, also bringing the information out, looking for translators, looking for families, printing booklets, giving them away to physicians in order to share them with the families. We had several meetings and seminars with doctors. Today, Kate is 20 years old.

Kate for Blog
Kate, age 20

 

Olga at World Congress 2012
Olga Timutsa, parent founder Russian Rett Syndrome Association with researcher Pavel Belichenko, MD, PhD, at the U.S. World Congress, New Orleans, 2012

 

In 2010, I learned that the Russian tennis player Vera Zvonareva had met with the families of children with Rett syndrome abroad and had participated in the charity event. We met and started to work on creation of the Russian Rett syndrome association. Vera became it's founder. During these five years we have created a website of the association, which is our main information tool today because through the site we are able to find the parents. They communicate with each other and can ask questions. In 2011 we held a conference on Rett syndrome with international participation in Kazan, which was attended by 200 doctors and specialists, and by 27 parents. In 2012, a seminar was held in Moscow for 65 parents. In 2013 and 2014 we conducted an "Academy of patients with rare diseases," together with our partner Kazan State Medical University. In 2015 we held webinars and mounted a series of programs "the diagnosis is not changing the child - it changes you" for the parents about the diagnosis, rehabilitation, training and adult life of girls with Rett syndrome.

The upcoming 2016 is very important for us, as we will hold the World Congress on Rett syndrome.

The Congress, initiated by our Association was supported by the Ministry of Health of Russia, the Public Chamber of Russia, the Ministry of Foreign Affairs of Russia and by the President of the Republic of Tatarstan. Co-organizer of the congress is Kazan Medical University. The scientific committee included scientists from the US, Australia, Japan, France, Britain, the Netherlands, Italy, Israel and Russia. We are pleased that Rettsyndrome.org and Rett Syndrome Europe is taking part in the organization of the congress. This is a unique event that will bring experts and scientists, parents and public representatives together. Today, we only know about 185 families with children with Rett syndrome in Russia, but the territory of Russia is large, so, we believe that there are much more such families. Lack of awareness, difficulty in diagnosis (tests can be done only in Moscow), the children are not accepted to schools and for rehabilitation. These are the issues that will be displayed to the government and the society through the Congress. It is true not only for Russia but for many other countries as well. We do need Rett centers. Our children need more attention and care. At the same time, Kazan has developed high-tech medicine. There are several rehabilitation centers for children with health problems and the development of several research centers and medical schools (universities, institutes and academia). I'm sure we will be able to work productively on the congress, to share experience, to hear about the progress of investigations on the syndrome (it is mostly important for the parents).

The registration to the Congress is already open on worldcongress2016.rettsyndrome.ru

Welcome to Kazan! See you at the Congress!

 

Russia World Congress on Rett Syndrome logo

World Congress on Rett syndrome logo