I am ready for a long road flight for work with a week- or months-long projects.
National Association of Rare Disease Experts
The network of medical experts (physicians and genetic scientists) dedicated to developing solutions for the treatment of rare diseases
Mission
To unite scientists, physicians, experts, healthcare professionals, and patient communities in Russia to ensure that every patient with a rare disease receives timely and highly effective care
Constitutive documents
What are Orphan Diseases?
Rare (orphan) diseases are a group of conditions that affect a small percentage of the population.
Many of these diseases are congenital and genetic, and the development of treatment approaches for them is still ongoing worldwide. This places a special responsibility on specialists to make correct decisions and save patients' lives and health in an ever-changing environment with a limited number of patients.
For this reason, the leading doctors and scientists of Russia have decided to unite their efforts in addressing various, yet fundamentally similar, tasks of providing aid to patients with orphan diseases.
For this reason, the leading doctors and scientists of Russia have decided to unite their efforts in addressing various, yet fundamentally similar, tasks of providing aid to patients with orphan diseases.
Focus Areas
Provision of medical care and ongoing monitoring for patients with rare diseases
Organization of multicenter cooperated trials for orphan diseases
Development of clinical guidelines
Collaboration with medical and patient communities focused on rare diseases, engagement with other professional associations, and organizing medical forums on orphan diseases
Expert assessment of clinical research and medical-social projects related to orphan diseases
Association Board
Chairman
Alexander G. Rumyantsev
– Member of the Russian Academy of Sciences, Doctor of Medical Science, Professor, Distinguished Physician of the Russian Federation, Chief Scientific Officer of the FGBU “Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology" of the RF Healthcare Ministry
Head of the Expert Council for rare (orphan) diseases of the State Duma Committee on Health Protection. Chairman of the Expert Council of the “Circle of Kindness” – the Foundation for support of children with severe life-threatening and chronic diseases.
Sergey I. Kutsev
– Member of the Russian Academy of Sciences, Doctor of Medical Science, Professor, Director of FGBNU «Research Center for Medical Genetics»
Chief Consultant on Medical Genetics of the RF Healthcare Ministry, Chairman of the Specialized Commission of Medical Genetics of the RF Healthcare Ministry, Chairman of the Ethics Commission of the RF Healthcare Ministry, President of the Association of Medical Geneticists of Russia.
Deputy Chairman
Natalia I. Ilyina
Deputy Chairlady
Distinguished Physician of the Russian Federation, Doctor of Medical Science, Professor, Clinical Services Deputy Director – Physician-in-Chief of the State Research Center Institute of Immunology of the FMBA of Russia
Board Members
Место работы
Grigory P. Arutyunov
Фамилия Имя Отчество
Department of Propaedeutics of Internal Diseases and General Physiotherapy, Russian National N.I. Pirogov Research Medical University
Место работы
Head of the Department
Должность
Distinguished Physician of the Russian Federation, Correspondent Member of the Russian Academy of Sciences, Doctor of Medical Science, Professor
Ученые звания/степени
еще более 20+ специалистов, высшей категории
Victoria Y. Voinova
Фамилия Имя Отчество
Academician Y.E. Veltishchev Scientific Research Clinical Institute of Pediatrics and Children’s Surgery, Russian National N.I. Pirogov Research Medical University
Место работы
Deputy Director of Translational Medicine
Должность
Doctor of Medical Science, Professor
Ученые звания/степени
Nikolay N. Volodin
Фамилия Имя Отчество
FGBU “Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology" of the RF Healthcare Ministry
Место работы
Head of the Pediatrics Section
Должность
Distinguished Physician of the Russian Federation, Member of the Russian Academy of Sciences, Doctor of Medical Science, Professor
Ученые звания/степени
Nikolay V. Zhukov
Фамилия Имя Отчество
FGBU «Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology» of the RF Healthcare Ministry
Место работы
Head of the Sector for Optimization
Должность
Doctor of Medical Science, Professor
Ученые звания/степени
Sergey N. Illarioshkin
Фамилия Имя Отчество
FGBNU «Research Center of Neurology»
Место работы
Deputy Research Director, Director of the Brain Institute, FGBNU National Neurology Center
Должность
Distinguished Physician of the Russian Federation, Member of the Russian Academy of Sciences, Doctor of Medical Science, Professor
Ученые звания/степени
Olga P. Kovtun
Фамилия Имя Отчество
Ural Medical University
Место работы
Principal of the University
Должность
Distinguished Physician of the Russian Federation, Member of the Russian Academy of Sciences, Doctor of Medical Science, Professor
Ученые звания/степени
Stanislav A. Krasovsky
Фамилия Имя Отчество
FGBU Scientific Research Pulmonology Institute, FMBA of Russia
Место работы
Lab Senior Research Associate
Должность
Candidate of Medical Science
Ученые звания/степени
Lyudmila M. Kuzenkova
Фамилия Имя Отчество
FGAU «National Medical Research Center for Children’s Health» of the RF Healthcare Ministry
Место работы
Head of the Children’s Psychoneurology Center
Должность
Doctor of Medical Science, Professor
Ученые звания/степени
Elena A. Latuysheva
Фамилия Имя Отчество
FGBU State Research Center Institute of Immunology of the FMBA of Russia
Место работы
Head of the Immunology Department
Должность
Doctor of Medical Science, Associate Professor
Ученые звания/степени
Svetlana V. Mikhailova
Фамилия Имя Отчество
«Russian Children’s Clinical Hospital» FGAOU
Russian National N.I. Pirogov Research Medical University
Russian National N.I. Pirogov Research Medical University
Место работы
Head of the Medical Genetics Department
Должность
Doctor of Medical Science, Professor
Ученые звания/степени
Dmitry A. Morozov
Фамилия Имя Отчество
Academician Y.E. Veltishchev Scientific Research Clinical Institute of Pediatrics and Pediatric Surgery, FGAOU VO
Место работы
Director
Должность
Doctor of Medical Science, Professor
Ученые звания/степени
Nuriya Z. Musina
Фамилия Имя Отчество
FGBU «Central Scientific Research Institute of Healthcare Organization and Information Technologies» of the RF Healthcare Ministry
Место работы
Head of the Department of Development and External Communication
Должность
Candidate of Pharmacological Science, Assistant Professor
Ученые звания/степени
Evgenia V. Nazarova
Фамилия Имя Отчество
FGBU State Research Center Institute of Immunology of the FMBA of Russia
Место работы
Deputy Physician-in-Chief.
Executive Director of the Association.
Executive Director of the Association.
Должность
Candidate of Medical Science, Assistant Professor
Ученые звания/степени
Tatiana M. Pervunina
Фамилия Имя Отчество
FBGU National V.A. Almazov Medical Research Center of the RF Healthcare Ministry
Место работы
Institute of Perinatology and Pediatrics, Director
Должность
Doctor of Medical Science, Professor
Ученые звания/степени
Elena Y. Petryaikina
Фамилия Имя Отчество
Russian Children’s Clinical Hospital
FGAOU Russian National N.I. Pirogov Research Medical University
FGAOU Russian National N.I. Pirogov Research Medical University
Место работы
Director
Должность
Distinguished Physician of the Russian Federation, Doctor of Medical Science, Professor
Ученые звания/степени
Andrey P. Fesenko
Фамилия Имя Отчество
FGAU National Medical Research Center for Children’s Health of the RF Healthcare Ministry
Место работы
Director
Должность
Distinguished Physician of the Russian Federation, Doctor of Medical Science, Professor
Ученые звания/степени
Anna Y. Shcherbina
Фамилия Имя Отчество
FGBU Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology of the RF Healthcare Ministry
Deputy Director of the Institute of Hematology, Immunology and Cell Technologies
Должность
Professor of the Russian Academy of Sciences, Doctor of Medical Science
Ученые звания/степени
Upcoming Events
27-28 Septmber 2024 года,
Moscow, Hotel Holiday Tagansky (Moscow, Simonovsky Val, 2)
Moscow, Hotel Holiday Tagansky (Moscow, Simonovsky Val, 2)
Past Events
20-21 October 2023, Moscow, D. Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology
19-20 February 2024, Russian Pirogov Medical University
21 June 2024, Moscow, г. Москва, National Medical Chamber
Membership in the National Expert Association of Rare Diseases
Membership in the National Expert Association of Rare Diseases is provided to persons over 18 working in the area of diagnostics and therapy of rare diseases as well as specialists in related specialties, research officers doing fundamental research in diagnostics, treatment and rehabilitation of patients with rare diseases.
Please read the Association Charter, enclosed application request and send it to the following address:
new@naerez.ru
01.
Pay the annual membership fee of 1000 rubles
The request of admission is considered for up to 14 working days
02.
What is required to become the member of the Association:
Feedback
Please fill in the form and we will answer all the questions you may have
Sending this request you agree to the processing of your personal data. The data are not transmitted to third persons
Our Address
Bld.2, Office 3/3, Chongarsky Bld, 1. Moscow
National Expert Association of Rare Diseases
NARDE
National Association of Rare Disease Experts
© All rights reserved. National Association of Rare Disease Experts, 2024
Partners of NARDE
Terms of Use
Agreement on the processing of personal data