RDD Program 28. February 2021

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


Dr. ANDRIN OSWALD,
CEO CENTOGENE

14:05 – 14:15

Welcome Address


DR. MARIA FLACHSBARTH, State Secretary, Federal Ministry for Economic Cooperation and Development, Berlin

14:15 – 15:00

Panel Discussion: The COVID-19 Pandemic and its Impact on Rare Disease Patients


Moderator: CHRISTINA SARTORI, Science Journalist and Researcher, Berlin

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


MARTINA MERTEN, Global Health Specialist, Berlin
Consanguinity and Rare Diseases: Challenges and Unmet Needs in Low-Income Countries

PROF. DR. HUMA CHEEMA, Prof. emeritus Children's Hospital and Institute of Child Health, Lahore
International Cooperationin Diagnostics: Improving the Situation of Patients in Pakistan

ATIF EJAZ QUREISHI, President Lysosomal Storage Disorder Society Pakistan, Lahore
A New Pathway in Pakistan: Improving Access to Diagnostics and Care through Patient Empowerment

DR. JORDI PEREZ LOPEZ, Head of Patient Advice & Liaison CENTOGENE, Berlin
International Partnerships: Potentials for Rare Disease Research and Innovations

15:45 – 15:50

Closing Statement


Dr. ANDRIN OSWALD, CEO CENTOGENE

15:50 – 16:00

Piano


OKSANA GORETSKA, CENTOGENE Rare Talents Stipendiary

The event is moderated by SUMI SOMASKANDA.

The program is subject to changes. All times shown are in Central European Time (CET).