Brian Fitzek

Author Archives

  • 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 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 […]

  • Special CGD Sessions offered at IDF 2019 National Conference

    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 […]

  • UPDATE: CGD Emergency Relief Fund from NORD

    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 […]

  • Understanding Limitations of CGD but Open to the Richness of Life

    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 […]

  • Fueling Advancements in Rare Disease: The Power of Partnerships and the Patient Voice

    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 Diagnosis

    “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 […]

  • Miracle Flights Offers Medical Travel Assistance for Children with CGD and Families

    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 […]

  • A Tale of Two Lives

    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 […]