Rare Disease Education Programs

Rare disease patients have learned to expect to face high hurdles when trying to find medical care.

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  • It usually takes years (maybe decasdes!) to get a diagnosis.

  • There are probably no FDA-approved treatments for their specific condition. (This is true for 95% of rare diseases.)

  • Traveling for hours, even to other states, to find a qualified specialist is the norm.

  • Treatments and medical equipment are very costly, and often not covered by insurance.

  • Physicians and other healthcare professionals are suspicious that patients might be attention- or drug-seeking due to unfamiliarity with their condition.

  • Biases in the healthcare system play a huge role: racial, gender, "difficult patient"

These challenges often result in suspicous providers and distrustful patients, and that dynamic is not coducive to positve patient outcomes.

Pathways To Trust believes the best way to promote good outcomes for patients is to eliminate the biases and negative feelings that interfere with the provider - patient relationship. We do this by helping all the rare disease stakeholders to share and appreciate one another's perspective. By bringing all stakeholders together to collaboratively develop disease-specific educaitonal programs for patients, providers and medical students, we foster the kind of trusting relationships necessary for the best medical outcomes and patient experiences.