Medical professionals often do not receive training to recognize a patient with one of the nearly 8,000 identified rare diseases; although, it is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Understanding the experience of a person with a rare disease can enable improved health, faster and accurate diagnosis, and experiences for rare disease families.
The RARE Compassion Program is a unique opportunity for medical students to develop relationships with patients and their families experiencing a rare diagnosis, with the goal of developing compassion and awareness for the challenges that patients diagnosed with a rare disease are faced with everyday. Furthermore, this program is committed to address inequities within the medical profession by pairing medical students and patients from underserved communities with the goals of fostering meaningful patient-doctor relationships, improving cultural congruence, and nurturing future advocates in rare disease.
Each year, the program connects U.S based medical students with rare disease patients and families to help foster meaningful doctor-patient relationships, inspire careers in rare disease care and research, and ultimately, through patient-centric listening and interactions, build the next generation of future medical professionals as key advocates for their patients.
This year, medical students will be provided the opportunity to meet with pediatric and adult patients in a 2-part rotation, and we are especially encouraging medical students and patients from underserved and underrepresented communities to participate in the program. Thank you to Travere Therapeutics, Ionis Pharmaceuticals, Ultragenyx, Zogenix and Horizon Therapeutics for your support of this program. Read more about this year’s program highlights in our press release here.
The application process for the 2021 RARE Compassion Program is now closed. Program participants who are accepted into this year’s program will be notified of acceptance and next steps starting the week of March 15th.