Fourth All-Russian Forum of Medical and Public Organizations «Let’s Unite Efforts in Fight Against Cystic Fibrosis»

On November 25-26, 2022, the Fourth All-Russian Forum of medical and public organizations «Let’s Unite Efforts in the Fight Against Cystic Fibrosis» was held online.

The forum was organized by «All-Russian Association for Cystic Fibrosis Patients» LLC with the support of the Charity Fund «Islands».

A distinctive feature of the Fourth Forum was its focus on the patient-parent community. Representatives of medical and scientific organizations acted as experts, explaining complex issues of diagnostics, therapy, cystic fibrosis prophylaxis, organization of assistance to patients in our country. The clinical cases were presented by the patients themselves or their parents, which gave the forum a special atmosphere of trust and brought together speakers and listeners. With great attention, participants listened to a lecture by the international expert in cystic fibrosis, Professor Eitan Kerem (Israel), on current and planned scientific research that will provide all patients with cystic fibrosis targeted therapy, regardless of the mutation class in the CFTR gene, including genetic engineering.

About 350 people took part in the forum every day. As in previous years, the geography of participants and lecturers was extensive: Belarus, Great Britain, Israel, Kazakhstan, Kyrgyzstan, Latvia, Moldova, Uzbekistan and, of course, Russia - from Kaliningrad to Vladivostok.

The employees of the Research Centre for Medical Genetics took a direct part in the preparation and holding of the forum, being members of the Organizing Committee of the event:

• Natalia Kashirskaya, professor, chairman of the Organizing Committee, president of «All-Russian Association for Cystic Fibrosis Patients» LLC, leading researcher of the genetic epidemiology laboratory at RCMG
• Sergey Kutsev, Director of RCMG, chief external expert in medical genetics of the Ministry of Healthcare of the Russian Federation, academician of the Russian Academy of Sciences
• Vera Izhevskaya, professor, Deputy Director for scientific work at RCMG, chairman of the «Russian Society of Medical Genetics»
• Rena Zunchenko, Deputy Director for scientific and clinical work at RCMG, corresponding member of the Russian Academy of Sciences
• Elena Kondratyeva, professor, Head of the scientific clinical department for cystic fibrosis at RCMG, Holder of an Advanced Doctorate in Medical Sciences

Among the lecturers and moderators: Kutsev S.I., Zinchenko R.A., Kashirskaya N.Y., Kondratieva E.I., Sherman V.D., Vasina E.V., Voronkova A.Y., Amelina E.L., Krasovskiy S.A., Maksimovsky V.B., Maksim V.B.

The issues of treatment, social and palliative care of patients with cystic fibrosis and their parents were discussed at the forum. Great attention was paid to antibacterial therapy and bronchial tract microbiota, taking into account the opinion of paediatrician/therapist, microbiologist, pharmacologist, hygiene issues to prevent cross-infection of patients in hospitals, at home and on vacation.

The question of targeted therapy by CFTR modulators was discussed in particular, their availability, clinical effectiveness, possible complications and genetic causes of drug inefficiencies in some patients were discussed. The difficulties of providing this newest pathogenetic therapy for adult patients, the role of «Circle of Good» Foundation in providing children with medication were discussed.

A special place was devoted to dietary therapy, its features against the background of taking targeted drugs, correction of electrolytic disorders in the syndrome of salt loss.

For the first time, the reproductive problems of people with cystic fibrosis, both men and women, were covered in detail. On the example of cystic fibrosis, the questions of primary prevention of hereditary diseases, psychological difficulties that can be encountered during the pre-conception screening, were considered. The questions of psychological component of personal and professional self-determination of senior teenagers are touched upon.

The trainees received useful advice from experienced lawyers, in particular on the conduct of the court in defending the right to life-saving drugs. There was discussion of the issues of kinesitherapy, its present and future.

Discussions were held on whether physical therapy was complementary to sports and on how to adapt physical therapy in adolescence, the role of parents in the exercise of kinesitherapy by their children.

A separate section of the forum was devoted to the «Work of Non-Profit Organizations to Help Families with Cystic Fibrosis». The moderator of the section was Olga Nesteruk, executive director of the Charity Fund «Ostrova». The section was attended by representatives from Russian charitable foundations («AiF.Good Heart», «For Life», «Pravmir») and public organizations («Mercy Gene», «Cystic Fibrosis Relief»).

Summing up the forum, the Organizing Committee and the participants agreed that it was important to continue campaigns of joint public action for patients.

For more details:  https://mukoviscidoz.ru/