Day 1 – 16/06/2026
07:45- 08:15
Registration and Coffee
Opening and Welcome Notes
08:15-08:20
Welcome Note and Scope of the Conference
Welcome Note and Endorsement
08:20- 08:30
Welcome Address
08:30- 08:35
Welcome Note and Endorsement
(pre-recorded video)
08:35- 08:50
The Role of CING in Caring for Patients with Rare Diseases
Session 1: Current Landscape and Unmet Needs in Rare Diseases
08:50- 09:00
Overview of the Rare Disease Landscape in Cyprus
09:00- 09:05
Message (Pre-Recorded Video)
09:05-09:20
European Research on Rare Diseases: A Long-Standing Commitment to make Europe a Leader at Global Level
09:20-09:35
Witnessing and Implementing Change Over the Past 2 Decades: The European Commission’s Action on Rare Diseases and Therapy Development
09:35-09:45
The European Economic and Social Committee’s Exploratory Opinion on the Advancement of Treatments for Rare Diseases
09:45- 10:00
EURORDIS’ Role in Facilitating Therapies for Rare Diseases (Virtually)
10:00 – 10:30
Panel Discussion: Creating a Union of Opportunity for Rare Diseases Therapy Development
10:30- 11:00
Coffee Break
Session 2: A Framework for Developing Rationally-Designed Therapies for Rare Diseases
11:00 - 11:15
Funding and Patient Advocacy Organisations Spearheading the Effort Against Rare Diseases
11:15 - 11:20
A European Inventory of Rare Diseases Through the Scope of ERNs (Pre-Recorded Video)
11:20- 11:35
The Current State of Affairs for Developing Rational Therapies for Rare Diseases
11:35 – 11:50
ERDERA Research Initiatives for Therapy Development in Rare Diseases
11:50 – 12:00
European Networking for Rare: Equity or Justice?
12:00 - 12:45
Panel Discussion: Creating Incentives and Overcoming Bottlenecks in Rare Drug Development
12:45-13:45
Lunch Break
Session 3: Drug Discovery, Development and Re-purposing in Rare Diseases
13:45- 14:00
Regulatory Considerations for Rare Disease Drug Development and Approval
14:00 – 14:15
Advanced Therapy Development for Erythroid Blood Disorders
14:15- 14:30
Building on Knowledge and Lessons Learnt: Developing Nusinersen for SMA (Virtually)
14:30 – 14:45
Developing Therapies for Rare Paediatric Endorcine Disorders
14:45 - 15:00
Coffee Break
15:00-15:15
Network Medicine and Pharmacology for Rare Diseases
15:15-15:30
Innovative Platform-Based Approach for Sustainable Repurposing of Medicines for Rare Diseases
15:30-15:45
A Clinical Model for Interdisciplinary Sharing of Knowledge and Innovation for the Development of Rare Diseases Therapies (Virtually)
15:45-16:30
Panel Discussion: Synergies in Academia and Industry to Accelerate Drug Development
16:30
End of Conference Day 1