Eighth All-Russia Conference of patient organisations on cystic fibrosis
From November 26-27, 2018, the 8th All-Russia Conference of Cystic Fibrosis Patient Organisations, “Current problems of CF patients in Russia: The Parent at the Epicentre,” was held in Moscow. It was part of European Cystic Fibrosis Awareness Week.
The aim of the event was to inform CF patients and their family members about modern treatment techniques, contribute to solving the issues of medical and social aid for such patients in Russia, and highlight the growing role of patient organisations in Russia’s regions in providing help to such patients and their families.
Location: The National Medical Research Centre for Children’s Health, Lomonosovsky Prospekt 2/1
Organisers: The National Medical Research Centre for Children’s Health of the Russian Ministry of Health, the Regional NGO “Help to CF patients,” and the Ostrova Charitable Foundation.
A hundred and two people took part in the conference: representatives from patient organisations dealing with issues of cystic fibrosis from 58 Russian regions, leading CF specialists, and representatives from the social security medical assessment board and other relevant ministries and agencies. There was a round-table discussion on providing medical and social care for CF patients in Russia.
The Ostrova Charitable Foundation spoke about its assistance programmes and how patient organisations can get involved with them.
Conference participants adopted a final resolution, which serves as a policy paper for the activities of the interregional NGO “Aid to CF patients”.