IDF 2019 National Conference Join the Immune Deficiency Foundation (IDF) at our biennial National Conference for people with primary immunodeficiencies (PI) and their families—offering strategies for coping with PI, providing opportunities to meet other facing similar journeys, and presenting the latest science-based information about PI diagnoses and treatments. The 2019 National Conference will be held […]
The National Organization for Rare Disorders (NORD) has expanded their assistance available to the Chronic Granulomatous Disease (CGD) community to assist individuals with CGD with limited resources to pay for some related expenses. To learn more about this program, click here. La Organización Nacional de Enfermedades Raras (NORD, por sus siglas en inglés) ha ampliado […]
Children with Chronic Granulomatous Disease (CGD) often seem healthy at birth but develop severe infections in infancy and during early childhood. This was the case of Erik Mainville of Interlachen, Florida. When Erik was born, he appeared to be a normal, healthy baby. In those early years, however, he remembers many infections, pneumonia episodes, and […]
Last week, to honor Rare Disease Day, thousands of people around the globe took time to advocate and raise awareness about rare diseases and their impact on patients’ lives. With only five percent of all rare diseases having an FDA approved treatment, there is tremendous unmet need that requires innovative collaborations and continued conversations across the healthcare […]
“Connecting the dots to a Chronic Granulomatous Disease (CGD) diagnosis can be challenging for the layperson,” explains Tangela Bass. “Few people know about rare diseases, including many physicians.” It’s only in hindsight that Tangela and her husband, Eric, can see the clues leading to their son’s diagnosis. In 2005 their son, Aaron was unknowingly born […]
Medical travel can be daunting and expensive. Miracle Flights may be the answer you’re looking for. Miracle Flights, through a Horizon Pharma supported program, provides children with CGD and their families free flights to distant, specialized care. This program is designed to improve access to health care by providing free medical air transportation to low-middle […]
It was the best of times, it was the worst of times. Paraphrasing this iconic statement is how Carla Dean of Titusville, Florida describes her journey with Chronic Granulomatous Disease (CGD) and her two childhood lives—one at home and one at the National Institutes of Health (NIH). By 9-years-old, Carla had already lost one infant […]
A Phase I/II clinical trial that involves using a Lentiviral vector as a curative treatment for X-linked Chronic Granulomatous Disease is underway in the U.S., with four patients out of five doing well after the procedure. The trial is based on studies currently in progress in the United Kingdom, where four patients have been treated […]
There are typical costs associated with having a disease, such as equipment and prescription drugs, but the costs are much higher for patients with rare diseases. Managing Chronic Granulomatous Disease (CGD) can place a significant financial burden on families and add up rapidly. The National Organization for Rare Disorders (NORD), a patient advocacy organization for […]
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 […]