There are 7,000 rare diseases
but less than 10% have an FDA approved treatment
There are 30 million rare disease patients in the US
but 95% of physicians feel unprepared to treat them
There are 6,093 US hospitals,
but rare disease patients travel an average of 563 miles just to get a diagnosis
It’s Time to Listen to the Rare Disease Community.
Rare disease patients face many forms of bias. Depending on the disease, sometimes it is racial bias, sometimes it is gender bias. Sometimes the healthcare system is just not equipped to recognize their symptoms or treat their conditions, and consequently, their pain is dismissed dismisses their pain.
Pathways To Trust focuses on the needs of patients facing high hurdles to care. We know these biases can be eliminated once these patients’ voices are part of the conversation. To make this happen, we provide disease-specific educational programs for medical students, healthcare providers and patients. Our content is developed by patients and patient advocates themselves, and incorporates the perspectives and contributions of multiple stakeholders so all members of the rare disease community can work together to deliver truly patient-centered care.
Our IDEAL Method:
IDENTIFY clinical and emotional needs of rare disease patients facing high hurdles to care
DEVELOP programs focusing on tools to empower patients to manage their treatment
EXPAND our impact by connecting stakeholders with complementary expertise to create programs that promote positive clinical and quality of life outcomes
APPLY for funding to support educational programs that address eliminating disparities in healthcare through communication
LOCATE professionals, advocates, and organizations that can help meet the needs of rare disease patients commonly overlooked by the healthcare system
