The Ministry of Health appoints the Council for Rare Diseases

The Council consists of:

1) Chairman - prof. dr hab. n. med. Anna Latos-Bieleńska - national consultant in the field of clinical genetics, head of the Chair and Department of Medical Genetics, Medical University of Karol Marcinkowski in Poznań, chairwoman of the Central Team of the Polish Register of Congenital Developmental Defects;

2) Deputy chairman - prof. dr hab. n. med. Anna Kostera-Pruszczyk - Head of the Department and Clinic of Neurology at the Medical University of Warsaw;

3) Secretary - representative of the Department of Treatment in the Ministry of Health;

4) members:

a) prof. dr hab. n. med. Krystyna Chrzanowska - head of the Department of Medical Genetics of the Institute "Monument - Children's Health Center", member of the Board of the Polish Society of Human Genetics, national coordinator of the ORPHANET project,

b) prof. dr hab. n. med. Olga Haus - president of the Polish Society of Human Genetics, head of the Department of Clinical Genetics at Collegium Medicum im. Ludwik Rydygier in Bydgoszcz, Nicolaus Copernicus University in Toruń,

c) prof. dr hab. n. med. Maciej Krawczyński - head of the Laboratory of Genetic Counseling in Eye Diseases, Medical University of Karol Marcinkowski in Poznań,

d) dr hab. n. med. Maria Jędrzejowska - Genetic Clinic of the Department of Medical Genetics, Institute "Monument - Children's Health Center",

e) prof. dr hab. n. med. Zbigniew Żuber - III Department of Pediatrics, Rheumatology at the Children's Hospital of St. Ludwik in Krakow,

f) prof. dr hab. Sylwia Kołtan - national consultant in the field of clinical immunology, Department of Pediatrics, Hematology and Oncology, Collegium Medicum im. Ludwik Rydygier in Bydgoszcz, Nicolaus Copernicus University in Toruń, University Hospital No. dr A. Jurasza in Bydgoszcz,

g) prof. dr hab. Jan Styczyński - national consultant in the field of pediatric oncology and hematology, Department of Pediatrics, Hematology and Oncology, Collegium Medicum Ludwik Rydygier in Bydgoszcz, Nicolaus Copernicus University in Toruń, University Hospital No. dr A. Jurasza in Bydgoszcz,

h) prof. dr hab. n. med. Jolanta Sykut-Cegielska - national consultant in the field of metabolic pediatrics,

i) prof. Mieczysław Walczak - national consultant in the field of endocrinology and pediatric diabetology, Pomeranian Medical University,

j) Stanisław Maćkowiak - president of the Federation of Polish Patients,

k) a representative of the National Chamber of Physiotherapists,

l) representative of the e-Health Center,

m) a representative of the National Health Fund,

n) a representative of the Medical Research Agency,

o) Dominika Janiszewska-Kajka - Deputy Director of the Department of Treatment in the Ministry of Health,

p) two representatives of the Department of Drug Policy and Pharmacy in the Ministry of Health,

q) representative of the Department of Medical Personnel Development in the Ministry of Health

The tasks of the Council include: 1) initiating and monitoring, in terms of content, the implementation of individual stages of the implementation of the Rare Diseases Plan;

2) appointing expert teams to carry out specific areas of the Rare Diseases Plan;

3) coordination of cooperation between Centers of Experts on Rare Diseases (OECR);

4) developing a model and principles of cooperation of the OECR with centers of clinical or medical genetics and genetic clinics;

5) developing and conducting a training cycle for OECR representatives on the use of large-scale genomic research;

6) development of recommendations for the creation and operation of specialist medical consultation teams in the field of large-scale genomic diagnostics of rare diseases in OECR;

7) supervising the work of the Scientific Council for Registers of Rare Diseases and the Scientific Council of the Information Platform "Rare Diseases".

Regulation: HERE

Source: Journal of Laws MZ