Special CGD Program at IDF Retreat 2016 Salt Lake City
Individuals and families living with Chronic Granulomatous Disease (CGD) came together for a special session at the Immune Deficiency Foundation (IDF) Retreat in Salt Lake City, held August 19-21. After a Friday and Saturday full of educational sessions and activities, a Special CGD Program was held on Sunday morning for more than 20 attendees.
The program began with Daniel Ambruso, MD of Children’s Hospital Colorado, who gave a helpful overview of CGD and discussed various topics, including genetics, research and treatment. “Dr. Ambruso explained everything so well and was so open to answer questions throughout his presentation,” said one attendee.
Another participant said, “The most valuable part of this session was learning the root cause of CGD and how it affects the body.”
After Dr. Ambruso’s presentation, members of the community were asked to share their personal stories and start a discussion of what living with CGD is really like. As a rare disease community, an opportunity to connect with others who understand is tremendously important and can be life-changing. “Listening to other people’s stories” was really meaningful for those who attended, and one commented, “The open panel discussion, hearing experiences from others is uplifting and inspiring.”
Thank you to all who participated in the session and made it a worthwhile experience!
IDF Retreats Special CGD Programs were sponsored by Horizon Pharma.
IDF Retreats were supported by charitable donations from CSL Behring, Grifols, Shire,
Horizon Pharma, IgG America\ASD Healthcare\US Bioservices, and Sigma-Tau Pharmaceuticals.
- Living with CGD