Beyond the diversity of the diseases, rare disease patients and their families are confronted with the same wide range of difficulties arising directly from the rarity of these pathologies:

Barriers to quality care fall into a number of categories:    


  • Financial and economic

  • Language and cultural

  • Communication

  • Health care system

  • Transportation

  • Bias based on culture/race/age

  • Fear

Patient navigation helps ensure that patients receive culturally competent care that is also:

  • Confidential

  • Respectful

  • Compassionate

  • Mindful of the patient’s safety

  • Referral Pathways

  • Educational Material

  • Case Management

  • Patient Tools

  • Advocacy 

Our advocacy team support and promote patients’ rights as they navigate the health care system. Our Communication & Advocacy programs are premised on the idea that when people are empowered with the necessary knowledge and skills, they can change their lives for the better. Our programs work through interpersonal communication and mixed media to help community members learn the skills and information necessary to improve their own health.

We facilitate the following 3 key areas of patient navigation:

  • Interactions with medical professionals and funders.

  • Interpersonal interactions with family and friends.

  • Situations which test our ability to make aspects of care more dignified.


Comprehensive health care is a joint responsibility between the patient and the medical team. To achieve better health results, patients must understand their illness, follow their treatment and discuss any concerns or disagreements they might have with their health care professionals.

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