As part of an outreach to medical students, the National Organization of Rare Disorders (NORD) exhibited at the annual convention of the American Medical Student Association in Washington DC on Feb. 27 and 28, 2015. Mary Dunkle from NORD says, “Prior discussions with medical students indicated a lack of understanding of how and why having a rare disease is different from having a more common one. The students are eager for information about rare diseases, as well as very idealistic and are genuinely eager to understand the needs of patients. NORD believes exposure of students to rare disorders leads to a better understanding of the associated challenges, the needs of patients and can lead to career-long allies for the rare disease community.”
With the cooperation of the event organizers, NORD was able to invite a few rare disease patients or caregivers to briefly share their stories in the exhibit booth. At an advertised time on both days, rare disease patients were present to connect with medical students one-on-one so they could hear first-hand about the challenges related to getting a diagnosis, lack of treatment, etc.
The CSRF was represented by Renee Dorsey and Stacy Hardy, both of whom reside in the Washington, DC area. Stacy reports, “What a WONDERFUL experience! I attended on Friday and there were 3 other survivors of rare diseases who also shared their experiences in the booth. My most memorable experience was that groups of students (Pre-Med, 1st, 2nd and 3rd year) came by the booth and most of them had heard of or had just recently studied Cushing’s disease! I was so excited to know that they had heard the term and they were both interested and delighted to meet someone who could share a real experience. This tells me that awareness efforts are paying off!” Renee reports, “I attended on Saturday and it was a wonderful opportunity to share my story to educate these medical students. The interaction with the students was great and they showed an excitement to learn how a rare disease impacts patients as well as the challenges Cushing’s patients face with diagnosis, and treatment. We definitely provided a voice for Cushing’s!”
The CSRF would like to thank NORD for this opportunity!