“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 […]
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 […]