Date
Saturday, September 21, 2019
Name
Life with a Nonsense or Other Rare Mutation
Session Format
Small-Group Discussion
Description
Around 7 percent of people with cystic fibrosis in the U.S. have nonsense and other rare mutations. In this session, we’ll explore how our lives have been impacted by being in this small but mighty group. We will discuss our hopes, fears, and our triumphs and how we pursue our best lives. Please note that this session will not be facilitated by a medical professional and the information shared is not to be taken as medical advice. Please consult your care team before making changes to your treatment plan.
Session Objectives
- Gain solidarity and support from others who are going through a similar experience.
- Share and learn about unique experiences of living with a nonsense or other rare mutation.