The new meeting of the Organizing Committee of the World Congress on Rett syndrome took place on July 10th, 2015.
It was a roundtable with participation of a member of the Federation Council of the Federal Assembly of the Russian Federation V.I. Kruglii, chairman of the committee on social policy of the State Council of the Republic of Tatarstan S.M. Zakharova, Deputy Prime Minister of the Republic of Tatarstan V.G. Shayhraziev, Minister of Health of the Republic of Tatarstan A. U. Vafin, representatives of the Ministries of Education, Labour, Employment and Social Security, Youth and Sports of the Republic of Tatarstan, members of the Public Chamber of the Republic of Tatarstan, researchers, health professionals, social workers, patient charitable organizations and members of the organizing committee of the Congress. Implementation of the plan for the preparation of the Congress Organizing Committee and interaction with the scientific committee, public authorities, benefactors and sponsors, parents, foreign organizations and partners are the topics discussed at the roundtable.
Director of the Association Olga Timutsa acquainted the participants with the progress report of the organizing committee since the last meeting (28th of April): the formation of a scientific committee; development of the website and branding of the Congress, the budget of the Congress, the association's activities, the vision of the role of the Republic in the work of the Congress.
The meeting was held in the format of lively discussion and active debate. V.G. Shahraziev noted that the task of the Congress is much deeper than just conducting the event. And so it is. "Today in Russia there is no specialized centers for patients with rare diseases," - said V. I. Kruglii. The guest of Tatarstan noted that Kazan and the Republic have a great potential and all the necessary resources. It is certainly an advanced region. Establishment of a center for people with rare diseases in Russia is a very important issue today, said S.I. Zakharov.
Participants of the meeting unanimously agreed that the Congress is essential for many different people such as researchers, professionals, patients' relatives and volunteers. Only together we can move closer to the goal, which is to improve the quality of life and health of people with Rett syndrome. As the motto of the Congress states: Together, we will rise above the dream!