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