Getting patients well, keeping them well, and focusing on a cure
Do I Have CGD?
After Being Diagnosed
General Information about CGD
Support for Parents/Patients
Wish Foundations
Kids/Teens/Young Adults
Doctor Visits & Hospitalizations
Specific Infecting Organisms
Drug Therapies
Specific Disease Help
Your Time in the Hospital
Financial Help
Sibling Support
Updates on CGD Patients (2011)
Updates on CGD Patients (2013)
Professional PID Links
Awarded Grants
Clinical Trials
Contact & Nonprofit Info
Financial Help
United States
  • Andre Sobel River of Life Foundation - Provides emergency assistance within 24 hours to single caregivers of children with catastrophic or life threatening illnesses who are in financial crises.
  • Aubrey Rose Hollenkamp Children's Trust Foundation - For families with children who have a life-threatening medical condition. You may submit your application at any time during the year. Applicants will be notified no later than 60 days after the Board of Trustees’ meeting (March, June, September and December). Grants must be used for outstanding medical bills that insurance will not cover.
  • The Bone Marrow Foundation - Funding to help cover the costs of donor searches, compatibility testing, bone marrow harvesting, medications, home and child care services, medical equipment, transportation, cord blood banking, housing costs and other expenses associated with the transplant.
  • Caring Voice Coalition - Their mission is to improve the lives of patients with chronic illness through financial, emotional and educational support. They help the uninsured and under-insured patient. There are only eight diseases that they support and one of them is chronic granulomatous disease!
  • Areas of help: Financial Assistance, Alternate Coverage, Therapy Appeals, SSDI/SSI Programs, Patient Education, Understanding Your Disability, Prescription Discount Card
  • The story of the Hurley family, who has sons with CGD, is published on page 30 of the summer 2013 issue of the Caring Voice Coalition magazine (look under “Media Center – CVC Community Magazine”. Another CGD family writes about twins with CGD in the winter 2012 issue, pages 8-12. (link)
  • Chronic Disease Fund, Inc. - Helps underinsured patients with chronic disease, cancers or life-altering conditions obtain the expensive medications they need.
  • COMPASS (Comprehensive Personalized Patient Prescription Advocacy & Support Services) Actimmune (Interferon gamma 1b) help. To enroll or contact COMPASS with questions, call toll-free 877-305-7704, Monday through Friday from 8:00 AM to 6:00 PM Eastern time.
    Co-Pay Assistance Program - offers capped monthly co-pays for commercially insured patients (patients not enrolled in Medicare or other government insurance programs). This program covers patient co-pay amounts and co-insurance (patients pay $0 per month). There are no forms or financial eligibility requirements. Patients who are registered in the COMPASS Program are automatically referred to the Co-Pay Assistance Program and co-pays and co-insurance are automatically applied by the patient’s pharmacy.
    Patient Assistance Program (PAP) - provides access to ACTIMMUNE® therapy (at no cost) to patients without insurance or patients rendered uninsured for ACTIMMUNE® due to payer denial of coverage. Initial eligibility and periodic verification of continued eligibility requirements apply.
  • Embrace Kids Foundation - Financial assistance for utility bills (gas, electric, phone), rent/mortgage payments, assistance with babysitters (offered for the patient so the parents can work or for the siblings while the parents are with the patient in the hospital), transportation.
  • Friends of Karen - Provides financial assistance for transportation to medical treatment including parking, meals for parents while a child is inpatient, home care needs, child care for siblings when parents have to be with their hospitalized child, health insurance and basic living expenses that become difficult due to lost wages as a result of the illness and the high cost of medical care. (New York Metropolitan area)
  • Give Forward - Empower friends and family to send love and financial support to patients as they navigate a medical crisis.  Helps patients and their families raise money for things like co-pays on expensive medicine, travel and lodging for treatment in other cities, and experimental treatments not covered by insurance.
  • Immune Deficiency Foundation Scholarship Programs - Scholarships to undergraduate and graduate students living with primary immunodeficiency diseases
  • Insure Kids Now! - No-cost or low-cost health insurance coverage through Medicaid and the Children’s Health Insurance Program (CHIP). Many parents may also be eligible. There is a link to health coverage programs in your state.
  • Kelly Anne Dolan Memorial Fund - (serving Pennsylvania, New Jersey, or Delaware) Assists with out-of-pocket expenses not covered by insurance.
  • Net Wish - Uses the power of the Internet to provide direct and immediate assistance (up to $500) to families and individuals who desperately.
  • The Medicine Program - Free prescription medications are available to those who qualify.
  • Need Help Paying Bills - Mortgage help, State & local assistance programs, credit card & medical debt, medical bills & free health care, rent assistance programs, electric & heating bills, assistance from charities. There is a forum.
  • Needy Meds - Assistance to people who are unable to afford their medications and health care costs.
  • Net Wish - Uses the power of the Internet to provide direct and immediate assistance (up to $500) to families and individuals who desperately.
  • NORD Patient Assistance Programs - Medical Assistance Programs for Uninsured Patients, Premium & Co-payment Assistance Programs (Primary Immune Deficiency), Early or Expanded Access to Investigational Drugs, Emergency or Limited Access for Products in Short Supply, Travel & Lodging Assistance for Clinical Trial Participants, Disease Specific Medical Assistance Funds.
  • Partnership for Prescription Assistance - Helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
  • Patient Services Inc. (PSI) - Evaluates an individual's financial, medical, and insurance situation to determine who is eligible for premium or co-payment assistance. Their A.C.C.E.S.S. program is free and helps families understand the complicated issues in proving entitlement for Social Security Disability, Supplemental Security Income, Medicare, and Medicaid as well as eligibility for health insurance through state high-risk pools and other alternatives, and through group health insurance continuation under federal law (COBRA and HIPAA).
  • Reimbursement Assistance for Actimmune - committed to working with all third-party payers, government agencies and major HMOs to secure coverage for Actimmune.
  • RxAssist - Comprehensive database of these patient assistance programs.
  • First Hand Foundation - Helps children with health-related needs (treatment, equipment, displacement, vehicle modification) when insurance and other financial resources have been exhausted. It has assisted more than 123,000 children in 73 countries.
  • Little Star Foundation - Helps children, families, individuals and communities worldwide. Provides medical supplies, equipment, food, shelter, clothing and toys for disease stricken and in need children.