2019

Yearly Archives

  • Don’t Miss Your Opportunity to Share Your Experiences!

    There is still time to complete the Immune Deficiency Foundation’s (IDF) first-ever Chronic Granulomatous Disease (CGD) Survey. All adults with CGD and parents of children with CGD are eligible to participate. Stem cell transplant and gene therapy recipients are also eligible to participate. Please check your inbox and spam/junk folders! Participating in the CGD Survey […]

  • Live Life Well: Beyond CGD

    Caitlin Powell’s induction into the world of Chronic Granulomatous Disease (CGD) began around age seven. At that time, she was experiencing abdominal pain due to an inflamed appendix. During surgical removal of her appendix, doctors serendipitously noticed a large granuloma on her intestines. The next month involved a flurry of doctors’ appointments to determine why […]

  • Don’t Miss Your Opportunity to Share Your Experiences!

    There is still time to complete the Immune Deficiency Foundation’s (IDF) first-ever Chronic Granulomatous Disease (CGD) Survey. Please check your inbox and spam/junk folders! We are still hoping to receive completed surveys from people affected by CGD in the IDF community. Participating in the CGD Survey will help increase what is currently known about CGD. […]

  • Clues to a Timely CGD Diagnosis

    Chronic Granulomatous Disease (CGD) is a primary immunodeficiency which may present with infection or inflammation. Unfortunately, many people with CGD go undiagnosed for many years, oten resulting in periods of recurring infections for patients. The Clinical Immunology Society (CIS) has created videos directed towards primary care providers and specialists who may encounter a patient with […]

  • It Takes a Village to Manage a Primary Immunodeficiency

    “The old saying that it takes a village to raise a child is particularly true for a child with a chronic illness, such as Chronic Granulomatous Disease,” says Barbara Meade. Barbara should know–her son Joseph was diagnosed with Chronic Granulomatous Disease (CGD) at the age of two. This was the early 90s, the days before […]

  • Chronic Granulomatous Disease (CGD) Survey: We Need Your Input!

    The Chronic Granulomatous Disease (CGD) Survey was emailed today! Please consider offering us a few moments of your time by completing the survey. This study is a collaborative effort with the CGD Association. Developed with immunologists who are experts in primary immunodeficiency diseases, including CGD, the purpose of this survey is to learn more about […]

  • Share Your Experience Living with CGD

    The Immune Deficiency Foundation (IDF) is excited to launch our very first CGD-specific survey, and we encourage you to participate when the survey is available in the upcoming weeks. Development of the CGD Survey was a collaborative effort—immunologists who are experts in primary immunodeficiency diseases, including CGD, worked with IDF and the CGD Association to […]

  • New Resource for Those Living with a Rare Disease

    Today, one in 10 people are living with a rare disease. This week, a new website RAREisCommunity.com was launched for the more than 350 million people around the world who are living with a rare disease, and a place for each unique voice and journey to come together around shared experiences. Resources on the new […]

  • Summer Travel Tips for Families with CGD

    Summer means travel for many people.  Being diagnosed with chronic granulomatous disorder (CGD) doesn’t mean you have to stay home. It is best to consult with your physician if you are traveling, especially if you are traveling abroad, but with a bit of planning you will be on your way.   Medication and Supplies Medication […]