For the last seven years, the Global Genes Rare Compassion Program has been providing medical students with an opportunity to bond with patients and families who have been diagnosed with a rare medical condition. There are almost 8,000 rare diseases identified globally. In the United States, that translates into 1 out of every 10 people living with a rare disease.
The goal of the program is to develop awareness and compassion. Often, medical professionals have not received sufficient training to be able to recognize a rare disorder. In many cases, the information on hand is sparse, and even experienced doctors cannot give an accurate diagnosis.
Understanding challenges faced by a patient with a rare disease results in improved health and paves the way to accurate diagnoses.
Inequities and Disparities
The Rare Compassion Program is focused on addressing inequities and disparities associated with the medical profession through the pairing of patients and students from communities with a diverse population. The Program emphasizes cultural balance and improved patient-doctor relationships as well as inspiring medical professionals to advocate for patients. Medical students and people with rare diseases who reside in communities with a diverse population are encouraged to take part in the program.
Program Overview
Medical students will be assigned two patients. They will be paired according to the disease of interest. The medical student will spend a minimum of one hour each month for four months with each patient either by video conferencing or by phone. Their goal will be mutual: building a relationship based on understanding and compassion.
Looking Forward
The Program emphasizes how inequities in healthcare, and especially biases in medical practice, result in poor quality care. Advocates of the Program hope to see continued improvement in care for this unique group of rare disease patients.
Upon completion of the eight-month program, medical students will be given an opportunity to become members of the David R. Cox alumni group which emphasizes compassion. Members of the group are researchers and clinicians who are advancing breakthroughs in the treatment, diagnosis, and care of rare disease patients.
The scholarship flier is available here.
