Workshop

Join Us on 24th May 2024

Empowering Change: Advancing Rare Disease
Care and Advocacy

02:30 PM - 5:30 PM
coffee
  • Coffee
  • Registration
  • Meeting Room 1, Ground Floor, Crowne Plaza, Riyadh, SA
  • 02:00 PM - 02:30 PM

Registration and Welcome Coffee

Advocacy
  • Advocacy
  • Policy

Advocacy and Policy

✓ Advocate for political recognition and dedicated policy frameworks for RDs.
✓ Campaign for budget allocations to address the unique needs of individuals with RDs.
✓ Review national plans to shorten diagnosis time and improve intervention efficiency.

Care
  • Access to Care

Access to Care

✓ Ensure availability, affordability, and coverage of RD tests and medications.
✓ Improve coordination of care across fragmented healthcare systems.
✓ Address geographical and cultural factors impacting RD care and access to services.

data Sharing
  • Data Collection
  • Sharing

Data Collection and Sharing

✓ Explore strategies for systematic, standardized data collection and sharing.
✓ Utilize technology infrastructure and telemedicine to enhance RD care.

Patient
  • Patient Empowerment
  • Support

Patient Empowerment and Support

✓ Enhance social and cultural acceptance, equality, and inclusion of individuals with RDs.
✓ Empower patients and families to self-care and advocate for their needs.
✓ Promote prevention, screening, and early intervention in RD management.

R&D
  • R&D

Research and Innovation

✓ Discuss incentives for innovation in the RD field.
✓ Promote research advancements and collaboration to improve RD care.

This is a Detailed List of the Event Key Objectives.