Recently, you either may have seen our blog post or received an e-mail or postcard about the upcoming IDF 2017 National Patient Survey. This survey has now been sent to a select number of households within the IDF community, including those living with Chronic Granulomatous Disease (CGD). If you received notification of this survey, please be on the lookout for your survey packet in the mail this week.
Completing this survey is particularly important for families affected by CGD. CGD affects an estimated 1,200 people in the U.S. and approximately 25,000 people worldwide. Participating in the IDF 2017 National Patient Survey not only helps the larger PI community, but also it will help increase what is currently known about CGD diagnosis and patient experiences.
Developed with immunologists who are experts in primary immunodeficiency diseases, including CGD, the IDF 2017 National Patient Survey aims to learn more about the how these diseases affect individuals’ lives, including experiences prior to CGD diagnosis, access to care and treatment.
If you have any questions, please contact IDF: 800-296-4433 or firstname.lastname@example.org.