Convene
Bring policymakers, clinicians, patient advocates, and industry partners into a shared regional dialogue on rare disease priorities.
Rare Diseases Equity Network
Advancing rare disease equity through regional collaboration and strategic policy action across MENA.
The Rare Diseases Equity Network is a multi-stakeholder platform bringing together policymakers, clinicians, partners, media, and patient advocates to translate the momentum of the World Health Assembly rare diseases resolution into coordinated regional action.
Why Now
The region needs a more coordinated, visible, and evidence-based rare disease response.
Rare diseases continue to be overlooked across many health systems in the region.
- National data systems, coding practices, and registries remain inconsistent, limiting visibility and planning.
- Late diagnosis, unclear referral pathways, and fragmented care continue to affect outcomes and quality of life.
- Access to testing, treatment, and long-term support is uneven and often unaffordable.
- Workforce training and coordinated care tools remain limited in many settings.
The adoption of the World Health Assembly rare diseases resolution creates a timely policy window for regional collaboration, shared learning, and evidence-based action.
Who We Are
A regional network built to strengthen collaboration and drive systemic change.
RDEN is a strategic, multi-stakeholder platform advancing equity and inclusion for people living with rare diseases across the Middle East and North Africa. The network convenes policymakers, health system leaders, clinical experts, and patient organisations around shared priorities and practical action.
RDEN exists to align fragmented efforts, integrate clinical and policy expertise with lived experience, and support clearer regional progress on earlier diagnosis, coordinated care pathways, and inclusive policy conversations.
How RDEN Works
A practical regional engine for progress.
RDEN operates through four interconnected functions that support collaboration, visibility, and capacity building across the rare disease community.
Coordinate
Align stakeholders around common priorities, milestones, and opportunities for collective action and learning.
Communicate
Develop clear, evidence-informed narratives and tools that make rare diseases more visible and understandable to decision-makers and the public.
Build Capacity
Support all network members through training, policy literacy, and structured knowledge exchange.
What We Do
Public-facing activities that strengthen visibility, learning, and action.
Media roundtables
Curated regional dialogues that elevate priority issues, align messaging, and amplify expert and patient voices through trusted media platforms.
Stakeholder capacity building
Virtual sessions supporting clinicians, advocates, and emerging leaders to build confidence in policy engagement, storytelling, and public communication.
Rare Disease Day campaigns
Bilingual campaign moments connecting public awareness, thought leadership, and partner amplification around equity-focused messages.
Best practices video series
Short-form content sharing lived experience, practical progress, and cross-country lessons through human and policy stories.
Vision & Mission
Embedding inclusive policy, coordinated care, and shared expertise in the regional rare disease agenda.
Vision
A MENA region where early diagnosis, coordinated care, and inclusive policies are the standard for all people living with rare diseases.
Mission
To drive systemic health equity through visibility, capacity building, regional collaboration, and constructive engagement with health system and policy conversations.
- Promoting dialogue between policymakers, clinical experts, and patient communities.
- Supporting advocates and professionals with policy literacy and communications tools.
- Highlighting gaps and opportunities identified by stakeholders across the care continuum.
- Encouraging shared learning and a stronger regional community of action.
Get Involved
Ways to participate in the Rare Diseases Equity Network.
RDEN is an open platform. Different communities participate in the network in different ways, depending on their role, experience, and interest.
Policymakers and health authorities
Engage in regional dialogue, share policy frameworks, and align national strategies with global resolutions.
Clinicians and researchers
Contribute expertise, share best practices, and support dialogue on diagnosis, care pathways, and coordinated implementation.
Patient groups and advocates
Join a regional community of peers, contribute lived experience, and help shape priorities, training activities, and awareness moments.
Partners and institutions
Support campaigns, convenings, and capacity building activities that strengthen rare disease equity across the region.
Contact
Contact the RDEN Secretariat.
For collaboration proposals, partnership discussions, media enquiries, or general questions, please contact the RDEN Secretariat. RDEN welcomes outreach from policymakers, civil society, clinicians, researchers, media, and supporting partners interested in contributing to regional rare disease equity efforts.
Email the secretariat
Secretariat
RDEN Secretariat
Organisation
Global Health Strategies
Contact
Hayder Tariq Rasheed (MD)
Role
Senior Associate
WhatsApp/Tel
009647838020330