Caring for Rare 2020
The first edition of the “Caring for Rare” conference was held from 23-24 October 2020. This edition was held virtually.
National Programmes for Rare Diseases in Central and Eastern Europe
Moderator: Davor Duboka
Panelists:
- Vicki Hedley, Rare Disease Policy Manager, Newcastle University;
- Ivana Badnjarević, President, NORBS
- Nataša Angjeleska, Regional Patient Advocate for HAE Patients in SEE region
Holistic Care and Rare Diseases
Moderator: Ivana Badnjarević
Panelists:
- Dorica Dan, President, RONARD
- Vlasta Zmazek, President, DEBRA Croatia
- Androulla Eleftheriou, Executive Director, Thalassemia International Federation
Help Lines and its impact
Moderator: Iva Omrčen
Panelists:
- Andrea Nenadić, Coordinator of the HELP Line, NORBS
- Sanja Bulog, Psychologist, HSRB
- Vesna Aleksovska, President, Life with Challenges
Access to Treatment / Access to OMP
Moderator: Davor Duboka
Panelists:
- Simone Boselli, Public Affairs Director, EURORDIS
- Bojan Trkulja, Director, INOVIA
- Dragana Atanasijević, Consultant, NOBRS
The role of patients, patient and umbrella organisations
Moderator: Vicki Hedley
Panelists:
- Stanimir Hasurdjiev, Chairman, Bulgarian National Patient Organisation
- Jana Popova, Executive Committee, EAMDA
- Tetiana Kulesha and Tetiana Zamorska, Rare Diseases of Ukraine
Newborn screening in Rare Diseases
Moderator: Ivana Badnjarević
Panelists:
- Goran Čuturilo, Ass.Professor of Paediatrics and Clinical Genetics, University children hospital Belgrade
- Gulcin Gumus, Research and Policy Project Manager, EURORDIS