The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
From preschoolers to college students, preparation for the upcoming school year is well underway. For those students living with chronic granulomatous disease (CGD), the new school year can bring about unique questions and concerns.
Yes. With daily prophylaxis, many young patients with CGD can lead lives like other children. As a result, children with CGD can attend preschool, K-12th grade, college, and beyond, and can also participate in most regular activities. Students with CGD, however, may miss school more frequently because they are sick and/or have doctor’s appointments. It’s important for them to avoid exposure to school-related activities that can put them at risk, such as playing in sandboxes, field trips to a farm, planting seeds in the soil, or taking a hayride. Communication with the school is key.
Parents should establish and maintain a strong, open line of communication with the school, including teachers, administrators, nurses, and counselors. These individuals, along with your child’s physicians, play important roles in your child’s health and well-being.
Be sure to contact the principal and request a meeting to discuss your child’s diagnosis. Include your child’s teacher(s) if possible. Important materials to share with school personnel include:
Remember that you are your child’s best advocate, and IDF provides resources and materials to help ensure a successful and fulfilling educational experience for your child.
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