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Connection and Knowledge at Rare of the Rare

October 2, 2020

IDF Rare of the Rare Summit Offers Comfort and Answers to the CGD Community

 

Dealing with a rare diagnosis such as Chronic Granulomatous Disease (CGD) is not for the faint of heart. Families living with CGD encounter unique challenges every day that require dedication and resilience to overcome those trials. IDF understands that these families need essential information to make decisions, manage the condition properly, and effectively communicate with healthcare providers.

During the diagnosis-specific programming at the recent IDF Rare of the Rare Summit, families impacted by CGD found comfort by the opportunity to have those questions answered by experts in the field who could provide them with candid answers. Questions ranging from diagnosis to therapies to locating specialists were posed during the two-hour session led by Drs. Beth Younger and Nicholas Hartog. Participants expressed that they went away empowered with many tips on making life with CGD more manageable.

“From the outside, an empowered patient looks like anyone else,” explains John G. Boyle, IDF President and CEO. “But it is the education that makes the difference and helps the empowered patient effectively contribute to their own care.”

The Rare of the Rare Summit was the brainchild of Boyle to address the concerns for those impacted by the ultra-rare primary immunodeficiencies. By empowering CGD patients with knowledge during the Summit, IDF aimed to improve medical outcomes, help relieve anxiety, and build confidence for these families to take control of their healthcare decisions.