On November 12-13, 2021, the online Third National Forum of Medical and Public Organizations "Joining Forces to Combat Cystic Fibrosis" took place
Researchers of the FSBI Academician N.P. Bochkov Research Centre for Medical Genetics participated in the preparation and conduct of the Third National Forum of Medical and Public Organizations as members of the Organizing Committee of the event (N.Yu. Kashirskaya (Chairman of the Organizing Committee), S.I. Kutsev, V.L. Izhevskaya, R.A. Zinchenko, E.I. Kondratieva (members of the Organizing Committee)). Among the lecturers and moderators were S.I. Kutsev, E.I. Kondratieva, N.Y. Kashirskaya, T.A. Adyan, E.V. Vasina, A.Y. Voronkova, A.S. Efremova, S.A. Krasovsky, T.Y. Maximicheva, Y.L. Melyanovskaya, N.V. Petrova, and S.A. Smirnikhina.
The Forum of Medical and Public Organizations "Joining Forces to Combat Cystic Fibrosis" is becoming a tradition. The Forum combined physician and patient sections, discussion platforms and round tables, master classes and symposiums. The Forum achieved its goal - the dialogue between doctors, patients, their families, specialists in the pharmaceutical industry, members of charitable foundations and organizations, and government representatives was held. More than 690 people participated in the Forum, more than a half of the participants (383) were cystic fibrosis patients or their parents. 208 people represented the medical and scientific community. 41 participants were representatives of NPOs, pharmaceutical companies, and interested people. Geography of participants and lecturers, as in previous years, was extensive - 15 countries of the world. About 70 lectures on cystic fibrosis issues were held in 12 sessions and round tables. The lecturers included both representatives of the parent/patient community and leading domestic and foreign experts in Cystic Fibrosis. Foreign guests included Alexander Elbert (USA), Jacquelien Noordhoek (Netherlands), David I. Wilford, Judi Maddison, Dr. Mary Carroll, Rebecca Cosgriff, Tony Wolstenholme, Tracey Daniels (UK), Prof. Eitan Kerem (Israel), Prof. Jaroslaw Walkowiak (Poland), Prof. Carla Colombo (Italy). Patients and their parents had a great opportunity to talk to them and get the answers to their questions. The issues of treatment and social care for cystic fibrosis patients and their parents were discussed at the Forum. They talked about what was new for patients and doctors in the past year; what changes were taking place in the organization of care for cystic fibrosis patients; what opportunities and prospects were offered for adult patients now. The issues of genetics and genomic editing as the key to cure cystic fibrosis were raised. The issue of targeted therapy, its availability and effectiveness was discussed. In a separate session the problems and solutions of cystic fibrosis treatment in the regions of the Russian Federation were discussed. In addition, questions about the development of palliative care in Russia and the experience of its provision abroad were considered.
The big session was on how to survive if there are no original drugs. They discussed the treatment at home; what it is like now, and what its future might hold.
A special place was given to challenging matters, i.e. about timely diagnostics of carbohydrate metabolism disorder; about why a cystic fibrosis child should have an enteral nutrition in time; about who requires the enteral nutrition in cystic fibrosis and when. Possibilities of changing regional law as part of expanding care for cystic fibrosis patients were presented. They talked about the legal aspects that were important for every parent to know about and that can help doctors to help patients more effectively.
They talked about kinesitherapy, its present and future. The discussion was about whether sports complemented physiotherapy and how to adapt physiotherapy in adolescence; about the problems of organizing kinesitherapy in hospital conditions.
A separate session of the Forum discussed the Work of Foundations and Patient Organizations. Olga Pylaeva, Executive director of the Ostrova Foundation held the section. Representatives of Russian charitable foundations Oxygen, House with Lighthouse, AiF.Kind Heart, Don’t Be Late and representatives of the British fund Child Health International attended the section. There was much discussion about the impact of the pandemic on the targeted and systemic assistance of foundations, and about the importance of cooperation among foundations at the international level. There was a presentation of the advanced training program "Psychological aspects of cystic fibrosis from an existential-humanistic approach" for psychologists, doctors and nurses.
The physicians attended a separate session that included news from the latest international cystic fibrosis congresses: the European Cystic Fibrosis Conference (Milan 2021) and news from the North American Congress (San Antonio 2021), online this year.
A detailed program, record of speeches and discussions, sponsors exhibition, and archival materials are available on the website of the Third National Forum of Medical and Public Organizations “Joining Efforts to Combat Cystic Fibrosis” involving international attendees and dedicated to the memory of Professor N.I. Kapranov