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
