As a patient-driven, service-based foundation, the Immune Deficiency Foundation (IDF) provides programs for patients and families living with all types of primary immunodeficiency diseases (PI), including Chronic Granulomatous Disease (CGD). These crucial patient education programs help patients and families manage PI.
- Local Education Meetings
One day educational meetings held across the U.S.
- Get Connected Meetings
Patients and families meeting in their local community
- IDF National Conference
Three days of valuable learning for the PI community
- IDF Retreats
Weekend gatherings for all ages
- IDF Youth Programs
Educational, fun activities for children with PI or have a family member with the condition
- IDF Teen Escape
Weekend programs designed for teens
To see all upcoming meetings and events, click here for the IDF Calendar of Events.
From helping you locate a specialist to keeping track of your healthcare records, IDF services are available for patients and family members. Perhaps you want to be connected with one of our peer support volunteers, who knows what it is like to live with CGD and can offer encouragement and reassurance. We have helpful information to further your understanding of health insurance coverage and even academic scholarships for students with various types of PI. Of course, if you need individualized help with any concern, Ask IDF is available for your own needs.
Locate a Specialist
IDF understands the challenges in finding a specialist who treats patients with CGD. We maintain a database to help patients, family and friends locate a physician. Click here to contact IDF for a list of specialists in your area.
IDF ePHR and PI CONNECT
The IDF ePHR is the electronic personal health record designed for the primary immunodeficiency (PI) community. Featuring innovative technology, IDF ePHR uses an advanced online system to transform how patients with PI manage their health. An added benefit for users of IDF ePHR is the opportunity to be a part of research by consenting into PI CONNECT, the new IDF Patient-Powered Research Network. Click here for more information about IDF ePHR and PI CONNECT.
Peer Support – Speak with Someone Who Understands
The IDF Peer Support Program is a caring community that connects people and patients who share similar relationships to CGD and PI. Participation in the program gives you the opportunity to interact with one of IDF’s volunteers, who is a trained volunteer with personal experience living with PI. This free resource is for anyone personally affected by CGD or PI – a patient, parent or other family member, friend or caregiver. And you can take comfort in knowing your communications and correspondence will be held in the strictest confidence. Click here to request IDF Peer Support.
Patient Insurance Center
Great progress has been made in the treatment of CGD and PI. However, these treatments often come at a significant financial burden to the patient or family living with these diseases. The majority of patients rely on some form of insurance to assist with expenses, but dealing with health insurance and understanding the maze of issues involved can be overwhelming. IDF understands these significant concerns for individuals and families living with PI. Our Patient Insurance Center provides information regarding insurance issues, as well as other possible sources of assistance, for you and your family. Click here to visit the IDF Patient Insurance Center.
You may have specific questions or simply want more information about the diagnosis, treatment, management or inheritance of CGD. We welcome your inquiries. Click here to contact IDF through the Ask IDF form.
TranscendRare – ACTIMMUNE Assistance Program
For patients receiving ACTIMMUNE (Interferon gamma-1b), Horizon Pharma has the TranscendRare Program, which offers patients on ACTIMMUNE, their families and healthcare providers one-stop convenient access to support services and to Program Coordinators who are available to answer questions about the Co-Pay Assistance Program, the Patient Assistance Program and other patient support resources. For more information, call 877-305-7704.
Caring Voice Coalition
Support for Chronic Granulomatous Disease. In addition to financial assistance, Caring Voice Coalition provides insurance education and counseling, and patient support programs for insured or underinsured patients. For more information, go to: www.caringvoice.org.