National Centre for Healthcare Audit and Inspection

Address: 174 Vaci str. Budapest H-1138 (: + 36 1 465-3813;

7: + 36 1 465-3811; e-mail: titkarsag@oszmk.hu

DIRECTOR GENERAL

Seminar on Centres of Excellence for Rare Diseases: present status and opportunities in Hungary

November 13, 2009

Budapest, Tűzoltó utca 37-47.

Department of Medical Chemistry, Molecular Biology and Pathobiochemistry, Semmelweis University

Organized by the Hungarian Rare Disease Centre of the National Centre for Healthcare Audit and Inspection (Peter Brunner general director)

Invited speakers:

Segolene Ayme (Rare Diseases Task Force of the European Commission)

Imre Boncz (Department of Health-Economics, Policy and Management University of Pecs)

Henriette Farkas (3rd Department of Internal Medicine, Semmelweis University)

Zsolt Illes (Department of Neurology University of Pecs)

Veronika Karcagi (Department of Molecular Genetics and Diagnostics National Institute of Public Health)

Gyorgy Kosztolanyi (National Advisory Board of Clinical Genetics)

Bela Melegh (Department of Medical Genetics University of Pecs)

Maria Judit Molnar (Centre for Rare Neurological Disorders Semmelweis University)

Ferenc Oberfrank (Institute of Experimental Medicine of the Hungarian Academy of Sciences)

Eva Olah (Clinical Genetic Centre, Institute of Paediatrics, University of Debrecen)

Gabor Pogany (Hungarian Federation of People with Rare and Congenital Diseases)

György Pfliegler (Division and Centre for Rare Diseases Medical and Health Science Centre, University of Debrecen)

Laszlo Szonyi (1st Department of Paediatrics Semmelweis University)

Sandor Turi (Department of Paediatrics University of Szeged)

1^st section:

Chairmen: Peter Brunner and Gabor Pogany

10:00 – 10:15         Gyorgy Kosztolanyi: Opening

10:15 – 11:00         Segolene Ayme: Excellence centres for rare diseases in Europe and their networking

11:00 – 11:10         Gabor Pogany: Collaborative capacities of rare diseases patient organizations

11:10 – 11:20         Imre Boncz , Ferenc Oberfrank: Reimbursement rules and procedures of special treatments in Hungary

11:20 – 11:30         Representative of the Ministry of Health: Hungarian rare diseases health policy

11:30 – 11:45         Sandor Turi: Neonatal metabolic screening in Hungary

11:45 – 12:00         Gyorgy Kosztolanyi: Laboratory diagnosis of rare diseases in the University of Pecs

12:00 – 13:00 Lunch

2^nd section

Chairmen: Segolene Ayme and Gyorgy Kosztolanyi

13:00 – 13:20         Sandor Turi: The follow-up of the metabolic and the patients with inherited disease at the Department of Pediatrics University of Szeged

13:20 – 13:40         Eva Olah: Organization of care for children with genetic disorders in the University of Debrecen.

13:40 – 14:00         Molnár Mária Judit: Rare disease management and clinical research at the Semmelweis University

14:00 – 14:20         Szőnyi László: The complex care of children with rare diseases in the 1^st Department of Paediatrics, Semmelweis University

14:20 – 14:40         Farkas Henriette: The Hereditary Angioneurotic Oedema Network of the Semmelweis University

14:40 – 15:00         Coffee break

15:00 – 15:20         Karcagi Veronika: Collaboration between diagnostical laboratory, clinical departments and patients’ organization

15:20 – 15:40         Illés Zsolt: Achievements in the rare neurological diseases centre of the University of Pecs

15:40 – 16:00         Pfliegler György: Experiences of the Division of Rare Disease 2001-2009

16:00                       Segolene Ayme: Closing remarks