Rare Disease Day Speaker Series
During the weeks around Rare Disease Day
RNE arranges for patients and/or family members to speak to medical audiences at major teaching hospitals, medical schools, and genetic counseling programs around New England. The presentation topics include any combination of the following possibilities: the diagnostic journey, living with the disease, coping strategies, challenges in the healthcare and/or educational systems, and others.
What to Expect
At each event, the patient presentation is preceded by a brief clinical overview of the disease by a geneticist to ensure that the audience has a medical foundation about the condition.
These sessions provide the medical community the chance to see patients with disorders they might not otherwise see. This opportunity also makes it more likely that they will recognize such patients in the future.
What is Rare Disease Day?
Rare Disease Day (RDD) is observed on the last day of February each year with the purpose of spreading awareness of the ramifications faced by those who live and work with the approximately 7000 rare diseases now recognized. Combined, more than 30 million adults and children in the United States (about 10% of the population) are affected by a rare disease. To find out more about RDD visit rarediseaseday.org.
Previous Events
Click the links below to see speakers and other information shared throughout the years.