Partnering With a Vast Network of Rare Disease Stakeholders

Pathways To Trust builds trust between the rare disease community the healthcare system by helping providers understand the realities patients face and helping patients better navigate everyday life and the systems on which they depend for their healthcare needs.

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With the support of our partner organizations listed here, we create education for healthcare providers and patients that goes beyond the clinical effects of rare conditions. Our provider education helps clinicians understand the 360-degree experience of life with a rare disease—not only the physical and medical complexities, but also the emotional and psychological toll, financial strain, impact on education and employment, social isolation, and the barriers that can make accessing appropriate care so difficult. By bringing the patient voice and lived experience into healthcare education, we help providers better understand the person behind the disease and deliver more informed, compassionate, and effective care.

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At the same time, our patient education gives people living with rare diseases and their caregivers practical tools to navigate life both in the exam room and beyond. We address the financial, professional, educational, social, and systemic barriers that can complicate daily life and access to care, while helping patients build the skills and confidence to communicate with providers, advocate for their needs, navigate complex healthcare systems, and remain engaged in their own care.