RareDisease Day Speaker Series
14 January 2020 - 06 March 2020
http://www.rarenewengland.org/RNE-Honors-RDD-Speaker-Series-2020.html, Several, USA
Hosted by Rare New England
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 includes 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.
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.