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Author Archives

  • Chronic Granulomatous Disease (CGD) Emergency Relief Fund from NORD

    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 Universal Language of Song

    Every culture enjoys song and music. Songs serve many different purposes: psych up dance tunes, soothing lullabies and expressions of love. Ultimately, music conveys one’s self to ourselves and to others. The Sing Me A Story Foundation uses this power of music to bring children’s stories to life through original song. Listen to 9-year old Ja’cori’s […]

  • Chronic Granulomatous Disease: A Saga of Discovery and Understanding

    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 […]

  • CGD & School Webinar

    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 […]

  • Young Man with CGD Helps Others, Advocates for the Community

    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 […]

  • Join Us for Special CGD Sessions at IDF Retreats 2018

    Making connections with others affected by Chronic Granulomatous Disease (CGD) can be life-changing. The Immune Deficiency Foundation (IDF) understands the importance of meeting others who understand your journey and learning more about the disorder and treatment. To bring together the CGD community, IDF will be offering Special CGD Sessions at the IDF Retreats 2018.  IDF Retreats offer a balanced […]

  • Sharing Your Story to Help Others

    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 […]

  • CGD Emergency Relief Fund Now Available

    Individuals and families living with Chronic Granulomatous Disease (CGD) have another resource to help them. The National Organization for Rare Disorders (NORD) recently established the CGD Emergency Relief Fund, which offers small grants to families or individuals diagnosed with CGD and in need of financial support when faced with limited resources to pay for unexpected […]

  • See You in California: CGD Community Gathers for #IDF2017NC

    Next week the Chronic Granulomatous Disease (CGD) community will gather at the Immune Deficiency Foundation 2017 National Conference in Anaheim, CA for a Special CGD Reception and Special CGD Symposium. Experts in the field of CGD will give educational presentations and answer questions from the community. Attendees will have the chance to network and meet […]