Online CGD community fosters connection

Chronic granulomatous disease (CGD) online community creates a new normal

Several months have passed since the COVID-19 pandemic first prevented IDF Get Connected Groups (GCG) from meeting in-person across the country. Rather than wait for the pandemic to end, the Immune Deficiency Foundation (IDF) shifted its programming online. Such an unusual experiment provided IDF with an opportunity to expand these meetings to diagnosis-specific groups that were previously unfeasible due to geographical limitations.

Will online Get Connected Groups change the support groups’ paradigm? It seems so. Having the ability to connect with others who are dealing with the same issues can make some of the most unique challenges seem more manageable.

Recently, IDF held its first Get Connected Group for the Chronic Granulomatous Disease (CGD) community. Attendees represented a wide breadth of the CGD community— patients, parents, caregivers, spouses from across the U.S., and even a participant from Portugal. Some had never met anyone else with their diagnosis.

“Living with CGD means facing unique challenges,” said one participant during the introductions. “From physical and emotional concerns to financial burdens, nothing is normal for us.” The bond was almost immediate as members shared their stories, concerns, and strategies.

"Everyone becoming more comfortable with connecting online is providing IDF with an opportunity to offer the support that comes from these Get Connected Groups to more members of the PI community,” explains John G. Boyle, IDF President and CEO. “Our community’s experience with and feedback about these online groups will shape our future approach and programming."

The experiences of constituents are very valuable to IDF as the organization considers a new program paradigm. The experience of the CGD group can best be summed up by Marc, one of the group’s participants, “It was a very eye-opening event. Connecting with other CGD patients, parents, and doctors from all over the country and beyond made me feel suddenly not alone anymore. Thank you so much for these online events. I would never be able to attend afar.”