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.
IDF is your home for hope.
Has your life been impacted by PI? When navigating symptoms, diagnosis, treatment, insurance, and emotions, turn to IDF for answers and connections.
Make a connection with someone who understands. We'll help pair you with a peer who has had similar experiences with PI.
Whether you prefer face-to-face interaction or prefer to meet virtually, IDF coordinates many support groups.
IDF Friends connects parents of children living with PI with other parents in similar circumstances.
From privacy to fair treatment, understanding your rights is the first step in advocating for yourself or a loved one.
“I think that IDF has such a welcoming community. If you are feeling a little bit lost or you’re having trouble keeping relationships or making friends, I think this is a wonderful opportunity to branch out of your social circle, go out of your comfort zone, and meet a lot of new people who can likely become lifelong friends.”
It can be a healing experience to see how other people navigate their PI journey and to share your own story.
PI impacts many lives. If you are living with PI, think you might have PI, are a caregiver, or healthcare professional, perhaps these resources will help.
Dedicated to health insurance and financial assistance.
Many older people need help paying for prescription drugs, healthcare, utilities and other basic needs. Ironically, millions of older Americans—especially those with limited incomes—are eligible for but not receiving benefits from existing federal, state and local programs. Ranging from heating and energy assistance to prescription savings programs to income supplements, there are many public programs available to seniors in need if they only knew about them and how to apply for them.
The Caregiver Action Network (CAN) is a family caregiver organization working to improve the quality of life for those who care for loved ones with chronic conditions, disabilities, disease or the frailties of old age.
The Children’s Defense Fund is a non-profit organization devoted to children’s issues, including the Children’s Health Insurance Program.
Families USA is a non-profit organization dedicated to the achievement of high-quality, affordable health and long-term care for all Americans. The website contains state and national resources.
Family Voices is a national organization that provides information and education concerning the healthcare of children with special health needs.
Good Days is a national non-profit charitable organization that lifts the burdens of chronic illness through assistance, advocacy, and awareness. Their financial assistance program for people with chronic granulomatous disease (CGD) providers up to $3500 for medication costs.
A resource for families, individuals and the self-employed, the Health Insurance Resource Center provides the tools to become a better-informed health insurance consumer.
This site provides links to state child and adolescent health insurance programs.
The Invisible Disabilities Association (IDA) helps those living with various conditions, as well as their loved ones, through their website, articles, literature, projects and seminars.
Keep Swimming Foundation provides relief to families of critically ill patients who require extended inpatient medical care at an accredited hospital through micro grants ranging from $100 to $1,500.
Provides children and their families free flights to distant, specialized care and second opinions.
The National Committee for Quality Assurance (NCQA) is a private, not-for-profit organization dedicated to assessing and reporting on the quality of managed care plans.
The National Disabilities Rights Network (NDRN) is a non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities.
The National Family Caregivers Association (NCFA) is a grass roots organization created to educate, support, empower and speak up for millions of Americans who care for chronically ill, aged or disabled loved ones.
The National Organization for Rare Disorders (NORD) is a non-profit organization that provides information, programs, and services for thousands of rare medical conditions, including primary immunodeficiencies.
The National Patient Travel Center is a non-profit organization that provides a variety of services to individuals and families seeking ways to travel long-distances for specialized medical evaluation, diagnosis and treatment.
NeedyMeds provides information on programs that help people facing problems paying for medications and healthcare; assists those in need in applying to programs; and provides health-related education using innovative methods.
The Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. They offer a co-pay relief program for individuals with all types of insurance.
The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other healthcare providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them.
The Patient Notification System is a program developed by the Plasma Protein Therapeutics Association (PPTA) to notify patients who receive plasma products, such as intravenous immunoglobulin (IVIG), about product recalls.
Patient Services Incorporated (PSI) is a non-profit charitable organization dedicated to subsidizing the high cost of health insurance premiums and co-payments for persons with specific chronic illnesses, including primary immunodeficiencies.
Rare Wish (a sister organization to Rare Strides ) grants wishes, funds clinical innovation, and offers free healthcare tools to improve the quality of life for families affected by rare disease.
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that healthcare professionals and patients can find the information they need.
Save Babies Through Screening Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening.
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