DAY 1 - October 23, 2020

OPENING CEREMONY

10:00 – 11:00

Moderator: Ms Ana Đukić

Speakers: 

  • Ms Ivana Badnjarević, President, NORBS
  • Ms Tamara Vučić, Spouse of the President of the Republic of Serbia, and Honorary Patron of the EURORDIS Black Pearl Awards
  • Dr Mirsad Đerlek, State Secretary, Minister of Health, Government of the Republic of Serbia 
  • Dr Marijan Ivanuša, WHO Representative and Head of WHO Office Serbia

National Programmes for rare diseases in Central and Eastern Europe

11:00 – 12:00

Moderator: Mr Davor Duboka

Speakers: 

  • Ms Victoria Hedley, Rare Disease Policy Manager, Newcastle University
  • Ms Ivana Badnjarević, President, NORBS
  • Ms Natasa Angjeleska, Regional Patient Advocate for HAE Patients in SEE region
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Holistic Care and rare diseases

12:30 – 13:30

Moderator: Ms Ivana Badnjarević

Speakers: 

  • Ms Dorica Dan, President, RONARD
  • Ms Vlasta Zmazek, President, DEBRA Croatia
  • Dr Androulla Eleftheriou, Executive Director, Thalassemia International Federation

Help Lines and its impact

13:30 – 14:30

Facilitator: Ms Iva Omrčen

Discussants: 

  • Ms Andrea Nenadić, Coordinator of the Help Line, NORBS
  • Ms Sanja Bulog, Psychologist, Croatian Alliance for Rare Diseases
  • Ms Vesna Aleksovska, Chairwoman, Life with Challanges