On February 10, a round table "Support for patients with rare diseases in Russia: Results of the past year and plans for the future" will take place
The round table “Support for patients with rare diseases in Russia: Last year's results and plans for the future” will take place on February 10 at 12:00 at Rossiyskaya Gazeta media center.
It will be attended by:
- Sergei Kutsev, Corresponding member of RAS, Director of FSBI Academician N.P. Bochkov Research Centre for Medical Genetics, Chief external expert in medical genetics of the Russian Ministry of Health.
- Elena Baibarina, Director of the Department of Medical Care for Children and Obstetric Services under the Russian Ministry of Health.
- Prof. Elena Kondratyeva, Doctor of med. sci., head of the FSBI RCMG Cystic Fibrosis Research and Clinical Department, Head of the FSBI RCMG Department of Genetics of Respiratory Diseases, Institute of Higher and Additional Vocational Education, head of the SBIH MR MRCDCC Cystic Fibrosis Department, a practitioner of highest qualification.
- Elena Amelina, Head of the Cystic Fibrosis Laboratory at the Moscow Research and Clinical Educational Centre for Respiratory Medicine.
- Alexander Tkachenko, Chairman of the Board of Directors of the “Circle of Kindness” Fundation to Support Children with Severe Life-threatening and Chronic Illnesses, including Rare (orphan) Diseases.
- Irina Myasnikova, Co-Chair of the National Union of Patients Public Associations, Chairman of Board of the National Society of Rare (orphan) Diseases.
The following matters will be discussed at the round table:
- Diseases that are already funded under existing state programs;
- Search for solutions to ensure drugs supply to the patients whose diseases have not yet been included in these programs;
- Federalization of orphan drugs procurement;
- The importance of dialogue between the government, medical and patients communities;
- Centralization of fundraising for children with serious illnesses and the presidential initiative, the Circle of Kindness Foundation.
- The online broadcast of the round table will be available at mc.rg.ru and on RCMG Youtube channel on February 10 at 12:00.
Media Accreditation for the round table in ZOOM – by Email firstname.lastname@example.org or call to +7903-171-81-99 before 9 am on February 10.