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MENA Rare Diseases Organization

Mission & Vision

Educate – Connect – Support

Our Mission

The MENA Organization for Rare Diseases is committed to improving the lives of individuals and families affected by rare diseases across the Middle East and North Africa region through education, advocacy, and comprehensive support.

Understanding Rare Diseases

• A rare disease is defined as a condition that affects fewer than 1 in 2,000 people
• There are over 10,000 different rare diseases identified worldwide
• Together, rare diseases affect more than 5% of the global population
• Treatments exist for only about 5% of these diseases, leaving a critical gap in care

Our Three Core Pillars

Everything we do is guided by these three fundamental principles

Pillar 1

Educate

We raise awareness and spread knowledge about rare diseases among healthcare professionals, patients, families, and the public.

  • ✓Educational events and conferences
  • ✓Public awareness campaigns
Pillar 2

Connect

We bring people together—patients, families, and professionals—to share experiences and knowledge.

  • ✓Social events and gatherings
  • ✓Healthcare professional networks
  • ✓Regional collaboration initiatives
Pillar 3

Support

We provide comprehensive support that connects patients and families with resources and others facing similar conditions.

  • ✓Community building initiatives
  • ✓Emotional and practical guidance

Our Vision

A MENA region where every person with a rare disease has access to timely diagnosis, effective treatment, and comprehensive support. We envision a future where rare diseases are better understood, patients are empowered, and no one faces their journey alone.

Together, we are building hope for a brighter tomorrow.