Rare Disease Day 2021 – Virtual Conference
Bringing together patients, medical experts, and advocates from around the world, our Rare Disease Day 2021 Virtual Conference highlights the novel problems caused by the current pandemic and the benefits of international diagnostic and research cooperation for rare disease patients.
| 14:00 – 14:05 | Welcome |
| 14:05 – 14:15 | Welcome Address |
| 14:15 – 15:00 | Panel Discussion: The COVID-19 Pandemic and its Impact on Rare Disease Patients ALBA ANCOCHEA, CEO Spanish Federation of Rare Diseases (FEDER), member of Board of Directors, EURORDIS, Madrid DR. LUCA SANGIORGI, ERN BOND Coordinator, Director Rare Skeletal Disorders Department, Rizzoli Orthopaedic Institute, Bologna BEGONYA NAFRIA ESCALERA, Share4 Rare, Patient Engagement in Research Coordinator, Hospital Sant Joan de Deu, Barcelona PROF. DR. PETER BAUER, Chief Genomic Officer CENTOGENE, Rostock |
| 15:00 – 15:45 | International Cooperation on Rare Diseases: Spotlight on Pakistan PROF. DR. HUMA CHEEMA, Prof. emeritus Children's Hospital and Institute of Child Health, Lahore ATIF EJAZ QUREISHI, President Lysosomal Storage Disorder Society Pakistan, Lahore DR. JORDI PEREZ LOPEZ, Head of Patient Advice & Liaison CENTOGENE, Berlin |
| 15:45 – 15:50 | Closing Statement |
| 15:50 – 16:00 | Piano |
The event is moderated by SUMI SOMASKANDA.
The program is subject to changes. All times shown are in Central European Time (CET).
