A diagnosis of narcolepsy can cause feelings of isolation in patients, but it doesn’t have to. One way to alleviate these feelings is meeting other people with the same disorder.
Rare disease advocacy organization Global Genes offers such a forum for people with narcolepsy who are 16 years of age and older in the form of regional patient and family meetups.
According to globalgenes.org:
During these events, attendees will be able to discuss the challenges of living with narcolepsy and learn new strategies for managing the disease, while gaining valuable information from leading experts and building relationships with others affected by narcolepsy. Topics include:
- Disease and treatment options
- The effect of isolation on patients and families
- Challenges of being an adult patient versus a family with an affected child
- Resources and support for patients, families and caregivers
- Connecting and maintaining relationships with other narcolepsy families
Upcoming 2016 meetups are scheduled for Chicago (July 9); Cambridge, Mass (August 13); and Houston (November 5).
