RARE Compassion Program Update

The RARE Compassion Program provides an opportunity for medical students to learn about the unique needs and challenges individuals and their families face living with an undiagnosed or rare disease. The program offers students a chance to build compassion, understanding, and empathetic communication skills, and gain interest in specializing in fields most relevant to rare disease. For patients, the program is an opportunity to advocate for the rare community, gain a greater understanding of the medical system, and become better prepared to communicate with their doctors and other medical professionals.

Kelly David, mother of Colin, who lives with AS, and Co-Vice Chair of the FAST Board of Directors, was matched with Christian Najjar, a medical student wanting a better understanding as to how rare disorders affect people’s personal lives. 

Christian is from Beaufort, SC and went to The Citadel to complete his undergraduate degrees in Biology and German. Currently, he attends the University of South Carolina School of Medicine and will graduate in 2026. Studying medicine has been a goal of his since he was in middle school because he has always been interested in the way the mind works. He plans to become a psychiatrist and after residency will work for the VA Healthcare system. 

He joined the RARE Compassion program because he wanted a better understanding as to how rare disorders affect people’s personal lives. He learns about the presentation of symptoms and mortality rates of diseases but never how a person’s way of life changes after a diagnosis or initial presentation of symptoms. 

Before joining the RARE Compassion program, he knew that Angelman syndrome is a rare genetic disorder that is due to a mutation on the 15th chromosome and affects the nervous system at a young age. What he knows now after joining the program is that there are a lot more presenting symptoms than one might expect and that the lives for the individual as well as caregivers change in order to manage the disorder. Having been given this perspective, he believes that as a future physician he will be a more effective caregiver. This means that he will better understand the family dynamic and be able to provide more support in the form of resources for families.