The Immune Deficiency Foundation (IDF) is excited to announce the launch of its new official IDF Facebook Group for People Living with Chronic Granulomatous Disease (CGD). As a “closed group,” the IDF’s objective is to create a safe place where people with CGD and family members can ask questions as well as share insights and […]
The Journal of the Pediatric Infectious Diseases Society recently published a supplement entitled “Chronic Granulomatous Disease: A Saga of Discovery and Understanding.” The supplement includes multiple articles regarding Chronic Granulomatous Disease (CGD). “From Fatal Granulomatous Disease to Chronic Granulomatous Disease” Paul G Quie, MD Journal of the Pediatric Infectious Diseases Society, Volume 7, Issue suppl_1, 9 […]
Most mothers in the Chronic Granulomatous Disease (CGD) community are aware of the health implications of being an X-linked carrier of CGD. Now for the good news: there may be some protection against atherosclerosis, a serious disease that causes plaque to build up inside arteries, which can lead to heart attack and stroke. If you’re […]
If you are a parent of a school-age child living with Chronic Granulomatous Disease (CGD), you may want to learn more about what you and your child’s school can do to make sure your son or daughter has a great school year. Horizon Pharma invites the CGD community to attend its CGD Connections™ CGD & School […]
Helping Parents and Patients Make Decisions Whether you are recently facing a diagnosis of Chronic Granulomatous Disease (CGD) or been living with CGD for years, you have likely carefully considered the treatment options with your healthcare provider. Hematopoietic stem cell transplantation (HSCT) can be a consideration for treating CGD, depending on the assessment of an […]
When Mits Morales was 9 years old, he woke up from a 12-day coma to a diagnosis of Chronic Granulomatous Disease (CGD) and a life transformed. “At first, I found myself asking ‘why me?’ recalls Mits. “But I eventually came to realize I could either feel sorry for myself or continue with my life.” In […]
This month, February 2018, marks the three-year anniversary of the Immune Deficiency Foundation’s resource dedicated to the Chronic Granulomatous Disease community, LivingwithCGD.org. In 2015, thanks to an unrestricted grant from Horizon Pharma, IDF set out to create the first website and blog dedicated to news and information regarding Chronic Granulomatous Disease (CGD), a rare type […]
New IDF President & Chief Executive Officer, John G. Boyle, Affirms Commitment to CGD Community In 2017, the Immune Deficiency Foundation (IDF), the national patient organization for people with primary immunodeficiency diseases (PI), including a rare type of PI known as Chronic Granulomatous Disease (CGD), welcomed new leadership. After an extensive national search, the IDF […]
Each year, as the holidays roll around, those in the Chronic Granulomatous (CGD) Community who celebrate Christmas wonder if they should get a real Christmas tree. It is a question that newly diagnosed families have, as well as those who have been living with CGD for years. While doctors’ opinions may differ, Dr. Harry Malech, […]
No family living with Chronic Granulomatous Disease (CGD) should ever feel that they are facing this disease alone. By sharing what you’ve learned from your experiences, you can help strengthen the community and support those who are struggling on their journey. If you are interested in sharing your story and helping others, Horizon Pharma will […]
One of the first things parents of children with Chronic Granulomatous Disease (CGD) have to learn fast is that they cannot keep their kids in a bubble and going to school is a natural progression of this truism. While patients with CGD can attend school like any other child, it’s important for parents to remain […]
Without a doubt, one of the highlights of the year for the Chronic Granulomatous Disease (CGD) community is the IDF Walk for Primary Immunodeficiency. The event is a special time to join together with friends and family, meet others with a primary immunodeficiency (PI) in our areas, raise funds for the Immune Deficiency Foundation (IDF), […]