There is a new council for rare diseases

The Council is a subsidiary body of the Minister of Health. The purpose of its establishment is to provide substantive support to the Minister of Health in the implementation of the Plan for Rare Diseases. The Rare Diseases Council is subordinated to two Scientific Councils: The Scientific Council for Rare Disease Registries and the Scientific Council of the Rare Disease Information Platform.

According to an order published on December 2 in the Health Ministry's Journal of Resolutions, the Council is composed of:

Chairperson - Prof. Anna Kostera-Pruszczyk, MD, PhD - Head of the Department of Neurology at the Faculty of Medicine of Warsaw Medical University

Secretary - Dominika Janiszewska-Kajka - Deputy Director of the Treatment Department at the Ministry of Health.

members:

• Prof. dr. hab. n. med. Alicja Chybicka - Member of Parliament of the Republic of Poland,
• Prof. Krystyna Chrzanowska, M.D. - head of the Department of Medical Genetics of the "Monument - Children's Health Center" Institute in Warsaw, board member of the Polish Society of Human Genetics, national coordinator of ORPHANET,
• Prof. Jolanta Maria Wierzba, MD - employee of the Department of Pediatrics, Hematology, Oncology, medical coordinator of the Rare Diseases Center of the University Clinical Center in Gdansk, vice-chairman of the Polish Society of Human Genetics,
• Tomasz Koszutski, M.D., Ph.D., professor of medicine - head of the Department of Surgery and Urology at the Upper Silesian Children's Health Center in Warsaw,
• Prof. Adam Torbicki, MD - an employee of the Department of Pulmonary Circulation, Thromboembolism and Cardiology at the Medical Center for Postgraduate Education of the European Health Center in Otwock,
• Edyta Borkowska, MD, PhD - national consultant in medical laboratory genetics, employee of the Department of Clinical Genetics in the Department of Clinical and Laboratory Genetics of the Faculty of Medicine at the Medical University of Lodz,
• Prof. Anna Latos-Bieleńska, MD, PhD - national consultant in clinical genetics, head of the Department of Medical Genetics at the Faculty of Medicine of the Karol Marcinkowski Medical University in Poznan, chair of the Central Team of the Polish Registry of Congenital Malformations,
• Sylwia Koltan, MD, PhD, UMK professor - national consultant in clinical immunology, employee of the Department of Pediatrics, Hematology and Oncology of the Collegium Medicum in Bydgoszcz, Nicolaus Copernicus University in Torun, A. Jurasz University Hospital No. 1 in Bydgoszcz,
• Prof. Jolanta Sykut-Cegielska, MD, PhD - national consultant in metabolic pediatrics, head of the Department of Congenital Malformations of Metabolism and Pediatrics at the Institute of Mother and Child in Warsaw,
• Prof. Dr. Katarzyna Kotulska-Jóźwiak - head of the Department of Neurology and Epileptology of the "Monument - Children's Health Center" Institute in Warsaw, member of the board of the European Reference Networks,
• Prof. Mieczyslaw Walczak, MD - national consultant in pediatric endocrinology and diabetology, employee of the Pomeranian Medical University,
• Krzysztof Szczałuba, MD - an employee of the Department of Medical Genetics at the Medical University of Warsaw, the Center of Excellence for Rare and Undiagnosed Diseases at the University Clinical Center of the Medical University of Warsaw,
• Zbigniew Żuber, MD - head of the Clinical Department of Pediatrics, Rheumatology at St. Louis Children's Hospital in Krakow,
• Prof. Dawid Larysz, MD - head of the Department of Head and Neck Surgery for Children and Adolescents at the Regional Specialized Children's Hospital in Olsztyn,
• Agnieszka Madej-Pilarczyk, MD, PhD - head of the Department of Medical Genetics of the "Monument - Child Health Center" Institute in Warsaw,
• Dr. n. med. Krzysztof Dowgierd - head of the Department of Maxillofacial Surgery of the Provincial Specialized Children's Hospital in Olsztyn, q) Stanisław Maćkowiak - president of the Federation of Polish Patients,
• Małgorzata Kośla - President of the PACS2 Research Foundation,
• Jacek Sztajnke - Parent Project Muscular Dystrophy Foundation,
• Jan Szczegielniak, Ph.D., associate prof. - National consultant in physiotherapy,
• Prof. Dr. Brigid Kwiatkowska - national consultant in rheumatology, head of the Early Arthritis Clinic, deputy director for clinical affairs of the Prof. Dr. Eleonora Reicher National Institute of Geriatrics, Rheumatology and Rehabilitation,
• Prof. Robert Smigiel, MD - head of the Department of Pediatrics, Endocrinology, Diabetology and Metabolic Diseases at the Piasts of Silesia Medical University in Wroclaw,
• eHealth Center representative,
• National Health Fund representative,
• Medical Research Agency representative,
• two representatives of the Department of Drug Policy and Pharmacy at the Ministry of Health, za) a representative of the Department of Medical Personnel Development at the Ministry of Health,
• A representative of the Department of Coordinated Care at the Ministry of Health,
• A representative of the e-Health Department at the Ministry of Health,
• Agnieszka Urbanska, MA - national consultant in long-term care nursing,
• Beata Ostrzycka, M.D. - national consultant in family nursing.