Russian Cystic Fibrosis Organisation Structure

i.  The “OOO” All Russian Association for those with CF, whose President is Professor Elena Kondratyeva is based in Moscow at the Republican Children’s Clinical Hospital. It has three supervising working groups but it is chiefly a medical forum with strong research and genetics elements. Its priority is medical care; parents and parents support groups are little involved. It organised the 11th National CF Congress.

ii.  Ostrova. A charitable fund, supported by a Russian philanthropist and based in St Petersburg. It supports CF care in St Petersburg, partly funds “Help for those with CF” ((iii) below), funds several  kinesitherapy centres across Russia and runs projects, which enhance the lives of young CF persons. It is the only serious funding NGO in Russia.

iii. Parental Support Groups (PSGs) , such as “Help for those with CF”, run by Irina Myasnikova. It depends partly on funding from Ostrova. It seems to focus on the rights of CF patients and their families as well as striving to ensure affected families receive their disability allowances.

iv. Funding charities: quite small and fragmented, aiming to raise money for medication or treatment of individual patients.