DAY 2 - October 24, 2020

Access to treatment / Access to OMP

10:00 – 11:00

Moderator: Mr Davor Duboka

Speakers: 

  • Mr Simone Boselli, Public Affairs Director, EURORDIS
  • Dr Tatiana Foltánová, PhD., Slovak Alliance of Rare Diseases
  • Dr Dragana Atanasijević, Consultant, NORBS

The role of patients, patient and umbrella organisations

11:00 – 12:00

Moderator: Ms Victora Hedley

Speakers: 

  • Ms Jana Popova, Executive Committee, EAMDA
  • Ms Tetiana Kulesha, Chairwoman,  All-Ukrainian Organization “Orphan Diseases of Ukraine”; and Ms Tetiana Zamorska, Board Members, Rare Diseases of Ukraine
  • Dr Stanimir Hasurdjiev, Chairperson, Bulgarian National Patients’ Organization

Newborn screening in rare diseases

12:30 – 13:30

Moderator: Ms Ivana Badnjarević

Speakers: 

  • Dr Goran Čuturilo, Ass.Professor of Pediatrics and Clinical Genetics, University Children’s Hospital Belgrade 
  • Ms Gulcin Gumus, Research and Policy Project Manager, EURORDIS