Talk 8: New Programs 2021-2022 by the Russian Spina Bifida Charity Fund Talk 9: Physical Medicine and Rehabilitation Management in Spina Bifida and Hydrocephalus: a

Anna Kostyleva

Charitable Foundation Spina Bifida, Russia

Background: The Russian Spina Bifida Charity Fund renders comprehensive assistance to children and adults who have Spina Bifida (SB). There are more than 1000 families with children with SB and about 100 adults who benefit from the fund.

Methods: The fund helps families, orphanage houses and boarding schools, in which children with SB grow, and also medical institutions, in which such children are being treated. The main goal of the fund is to improve the life quality of the children and adults with SB.

Results: The main programs of the fund are systemic. In 2021-2022 several new programs were started:

Conclusion: The new program 2021-2022 by the Spina Bifida Charity Fund helps to improve the life of persons with Spina Bifida in Russia.

Support program for pregnant women expecting a child with SB: informing about possible routing and experts in carrying out medical treatment, childbirth and rehabilitation, legal and medical support, accommodation compensation, assistance in the organization of expert management of a child until one year; Free transportation for individuals with Spina Bifida and their families in 25 cities; SB Institute is the first step in developing a system of professional medical and rehabilitation assistance for children with SB all over Russia; A sports project aimed at popularizing adaptive sports as one of the rehabilitation components and a tool for socialization; SB Club 14+ , brings together people with SB. The club provides information and brings people in contact with qualified SB specialists from different fields to receive timely advice and support where need; School of foster parents has been launched. This unique project consists of a series of webinars on the most pressing issues of new and still inexperienced foster parents, as well as candidates for foster parents of children with SB; A project of systemic assistance for children with SB has been launched (more than 250 children in the project): home visits, neurological examinations, targeted assistance and systematic online training.