Special CGD Program at IDF Retreats 2016 – Boston and Salt Lake City
Individuals and families learned the latest about Chronic Granulomatous Disease (CGD) and shared their experiences at the Special CGD Program at the IDF Retreat in Boston, held June 17-19.
Daniel Ambruso, MD, Children’s Hospital Colorado presented an overview of CGD and gave insights about genetics, research and treatment. “Amazingly enough, 20 years later, I learned more about the disease and the details behind the scenes on how the cells work in CGD patients and how it was discovered and continues to be researched,” said a mother of son with CGD.
Attendees then had the opportunity to ask questions and share their stories. Because CGD is a rare primary immunodeficiency, those affected by it can feel isolated at times. The Special CGD Program gave this group a valuable opportunity to connect. One attendee said, “Sharing our stories with other families really helped.”
There will be another IDF Retreat with Special CGD Program in Salt Lake City, August 19-21, 2016. Individuals, parents, siblings, children and partners are encouraged to attend.
IDF Retreats are weekend gatherings are designed to help every attendee learn the latest news and information from top specialists, make new friends, and have a good time.
Special CGD Program Agenda at IDF Retreat Salt Lake City
Sunday, August 21
9:00 – 12:00
This session will include a presentation and Q & A session with a healthcare professional. A panel of individuals diagnosed with CGD and caregivers will share their stories, and attendees can interact with each other and receive valuable information and support.
– 9:00 Welcome & Introductions
– 9:15 Overview & Treatment Options for CGD: Daniel Ambruso, MD, Children’s Hospital Colorado
– 10:15 Panel Discussion & Networking
IDF is pleased to offer scholarships for individuals and families with CGD attending IDF Retreats, including retreat registration, hotel room and limited travel. Please register as soon as possible to take advantage of the limited scholarship funding that is available.
To learn more and to register for the Salt Lake City retreat, e-mail firstname.lastname@example.org.
IDF Retreats Special CGD Programs are sponsored by Horizon Pharma.
IDF Retreats are supported by charitable donations from CSL Behring, Grifols, Shire,
Horizon Pharma, IgG America\ASD Healthcare\US Bioservices, and Sigma-Tau Pharmaceuticals.