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Find other support

Note that the Immune Deficiency Foundation provides this information for awareness purposes and does not endorse any of the listed organizations.

Other support organizations

These organizations offer support ranging from financial help with prescription costs to travel for specialty care to analyses of specific insurance plans.

 

ABLE National Resource Center

The ABLE National Resource Center is the leading source of objective, independent information and best practices related to tax-advantaged ABLE savings accounts and federal and state-related ABLE programs and activities. ABLE Accounts are tax-advantaged savings accounts for individuals with disabilities and their families.

Accessia Health

Accessia Health logo.

Accessia Health® is a national nonprofit 501(c)(3) organization that provides programs and services to individuals of all ages who are living with a rare or chronic health condition. With 90+ disease programs and over $1 billion in assistance distributed, we offer case management, education, and financial support for health insurance premiums, medication copayments, travel, and other essential medical expenses.

Air Care Alliance

The Air Care Alliance is a 501(c)(3) nonprofit public service organization representing a nationwide network of volunteer pilot groups that deliver impactful and inspiring service through aviation. ACA encourages volunteerism among pilots, helps patients access the free air transportation they need, and ensures that charitable aviation remains a viable resource to those who need it most.

The Assistance Fund

The Assistance Fund is an independent 501(c)(3) organization that helps patients and families facing high medical out-of-pocket costs by providing financial assistance for their copayments, coinsurance, deductibles, and other health-related expenses.

BenefitsCheckUp

National Council on Aging's BenefitsCheckUp® is a free, confidential service that connects older adults to programs that can help them stay healthy and independent. Since 2001, BenefitsCheckUp has been connecting older adults to programs that can help them afford nutritious food, prescriptions, health care, utilities, housing, and more.

Caregiver Action Network

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.

Dollar For

Most hospitals are required to have programs that discount or completely forgive bills for some patients. But they don’t make it easy. Dollar For helps individual patients navigate and access hospital financial assistance.

Family Voices

Family Voices is a national nonprofit led by families and friends of children and youth with special health care needs (CYSHCN) and disabilities. We connect a network of family-led organizations across the United States that provide support to families of CYSHCN.

Good Days

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.

HealthWell Foundation

The HealthWell Foundation is a leading independent non-profit dedicated to improving access to health care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses.

Insure Kids Now

This site, operated by the Centers for Medicare & Medicaid Services (CMS), provides information on state child and adolescent health insurance programs like Medicaid and the Children's Health Insurance Program (CHIP).

Invisible Disabilities Association

The Invisible Disabilities® Association (IDA) is a 501(c)3 nonprofit. We are passionate about providing awareness that invisible illness, pain and disabilities are very real! Our mission is to encourage, educate and connect people and organizations touched by illness, pain and disability around the globe. Envision with us, a world where people living with illness, pain and disability will be Invisible No More®.

Mercy Medical Angels

Mercy Medical Angels removes the barrier to medical care with transportation on the ground with gas cards, bus and train tickets and in the air with flights flown by volunteer pilots and the commercial airlines. Mercy Medical Angels is the largest charitable medical transportation system in the world. Last year, we provided more than 53,000 free patient trips to clinical care.

Miracle Flights

We provide free commercial flights to children and their families in need of life-changing medical care not found in their communities.

National Committee for Quality Assurance

NCQA gives consumers the information they need to find high-quality health care. We do this by measuring the quality of practices, providers, health plans and other health care organizations. NCQA's report cards help you identify high-performing health care organizations. 

National Disabilities Rights Network

The National Disabilities Rights Network (NDRN) is a nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP) for individuals with disabilities. We’re the only legally based advocacy organization established by Congress to protect the rights of all individuals with disabilities.

NeedyMeds

NeedyMeds is a 501(c)(3) national non-profit that connects people to programs that will help them afford their medications and other healthcare costs.

NORD Rare Caregiver Respite Program

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. Our Respite Program provides financial assistance to enable caregivers a break to attend a conference, event, or simply have an afternoon or evening away from caregiving.

NORD RareCare Patient Assistance Programs

NORD RareCare logo.

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. NORD's RareCare® Patient Assistance Program offers more than 100 opportunities for financial aid to pay for the medical care you need and to help you through emergency situations.

PAN Foundation

As a leading charitable foundation and healthcare advocacy organization, the Patient Access Network Foundation is dedicated to accelerating access to treatment for those who need it most and empowering patients on their healthcare journeys. Since 2004, our financial assistance programs have helped more than 1.3 million people to start or stay on life-changing treatment.

Partnership for Prescription Assistance

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.

Patient Advocate Foundation

Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses.

Patient Notification System

Led by the Plasma Protein Therapeutics Association (PPTA), the Patient Notification System was developed by the manufacturers of plasma therapies with direct input from consumers. The Patient Notification System is a free, confidential, quick communication system providing information on withdrawals and recalls.

Rare Wish

moon over logo reading rare wish

Rare Wish is a 501 (3) c nonprofit organization (and sister organization to Rare Strides) with the mission to improve the quality of life for rare families by granting wishes, funding clinical innovation, and offering free healthcare tools.

RxAssist

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

Save Babies Through Screening Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening.

Triage Health

Triage Health provides free education on legal and practical issues to help you navigate health care, through resources, materials, and events. This is especially important when navigating a chronic or serious medical condition. Triage Health is a program of Triage Cancer®.

Manufacturer copay assistance programs

Medication manufacturers sometimes offer patient assistance programs to off-set insurance copays. Find your medication below for a link to the manufacturer's program. Note that medications that are not listed either do not have a program or the Immune Deficiency Foundation is not aware of one.

Actimmune

(Manufacturer: Amgen )

Recombinant interferon gamma-1b. 
Approved to treat: Chronic granulomatous disease (CGD).

Report side effects/adverse events at 1-866-479-6742 (Option 1).

Alyglo

(Manufacturer: GC Biopharma )

Administration: IVIG   
Concentration: 10% (100 mg/mL)
Approved for: Ages 17+ 

Report side effects/adverse reactions at medicalinfo@gcbiopharmausa.com or 1-833-426-6426.

Asceniv

(Manufacturer: ADMA Biologics )

Administration: IVIG 
Concentration: 10% (100 mg/mL) 
Approved for: Ages 12+

Report side effects/adverse reactions at PV@admabio.com or 1-800-458-4244, option 2.

Bivigam

(Manufacturer: ADMA Biologics )

Administration: IVIG 
Concentration: 10% (100 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at PV@admabio.com or 1-800-458-4244, option 2.

Cutaquig

(Manufacturer: Octapharma )

Administration: SCIG 
Concentration: 16.5% (165 mg/mL) 
Approved for: Ages 2+

Octapharma and Pfizer both distribute Cutaquig. Each company has its own product website and may have its own copay assistance program. If your infusion center or hospital supplies Cutaquig, it is typically distributed by Octapharma. If you get Cutaquig through a specialty pharmacy/for home care, it is distributed by Pfizer. 

Report side effects/adverse reactions at 201-604-1137.

Cuvitru

(Manufacturer: Takeda )

Administration: SCIG 
Concentration: 20% (200 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at pvsafetyamericas@takeda.com or 1-877-825-3327.

Gamifant

(Manufacturer: Sobi )

Emapalumab-lzsg. 
Approved to treat: Primary/familial hemophagocytic lymphohistiocytosis (HLH).
Ages: 0+ years old.

Report side effects/adverse events at medinfo.us@sobi.com or 866-773-5274.

Gammagard Liquid

(Manufacturer: Takeda )

Administration: IVIG or SCIG
Concentration: 10% (100 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at pvsafetyamericas@takeda.com or 1-877-825-3327.

Gammagard Liquid ERC

(Manufacturer: Takeda )

Administration: IVIG or SCIG
Concentration: 10% (100 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at pvsafetyamericas@takeda.com or 1-877-825-3327.

Gammaked

(Manufacturer: Kedrion )

Administration: IVIG or SCIG
Concentration: 10% (100 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at 1-855-353-7466 or https://www.kedrion.us/ pharmacovigilance/.

Gammaplex

(Manufacturer: Kedrion )

Administration: IVIG 
Concentration: 5% (50 mg/mL) or 10% (100 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at 1-855-353-7466 or https://www.kedrion.us/ pharmacovigilance/.

Gamunex - C

(Manufacturer: Grifols )

Administration: IVIG or SCIG
Concentration: 10% (100 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at https://www.grifols.com/en/notification-of-adverse-reaction

Hizentra

(Manufacturer: CSL Behring )

Administration: SCIG 
Concentration: 20% (200 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at Adverse.Events.Global@cslbehring.com or 1-866-915-6958. 

HyQvia

(Manufacturer: Takeda )

Administration: Facilitated SCIG 
Concentration: 10% (100 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at pvsafetyamericas@takeda.com or 1-877-825-3327.

Octagam

(Manufacturer: Octapharma )

Administration: IVIG   
Concentration: 5% (50 mg/mL) or 10% (100 mg/mL)*  
* Octagam 10% is approved for chronic immune thrombocytopenia and dermatomyositis. 
Approved for: Ages 6+ 

Octapharma and Pfizer both distribute Octagam. Each company has its own product website and may have its own copay assistance program. If your infusion center or hospital supplies Octagam, it is typically distributed by Octapharma. If you get Octagam through a specialty pharmacy/for home care, it is distributed by Pfizer. 

Report side effects/adverse reactions at 201-604-1137.

Panzyga

(Manufacturer: Octapharma )

Administration: IVIG 
Concentration: 10% (100 mg/mL) 
Approved for: Ages 2+

Octapharma and Pfizer both distribute Panzyga. Each company has its own product website and may have its own copay assistance program. If your infusion center or hospital supplies Panzyga, it is typically distributed by Octapharma. If you get Panzyga through a specialty pharmacy/for home care, it is distributed by Pfizer. 

Report side effects/adverse reactions at 201-604-1137.

Privigen

(Manufacturer: CSL Behring )

Administration: IVIG 
Concentration: 10% (100 mg/mL) 
Approved for: all ages

Report side effects/adverse reactions at Adverse.Events.Global@cslbehring.com or 1-866-915-6958.

Xembify

(Manufacturer: Grifols )

Administration: SCIG 
Concentration: 20% (200 mg/mL) 
Approved for: Ages 2+

Report side effects/adverse reactions at https://www.grifols.com/en/notification-of-adverse-reaction

Xolremdi

(Manufacturer: X4 Pharmaceuticals )

Mavorixafor.
Approved to treat: Warts, hypogammaglobulinemia, immunodeficiency, myelokathexis (WHIM) syndrome.
Ages: 12+

Report side effects/adverse events at 1-866-MED-X4MI (1-866-633-9464).

Organizations for specific types of PI

These organizations represent and support patients and their caregivers who have specific types of PI.

A-T Children’s Project

ATCP logo

The A-T Children’s Project is a nonprofit organization that raises funds to support and coordinate biomedical research projects, scientific conferences, and a clinical center aimed at finding a cure for ataxia-telangiectasia, a lethal genetic disease that attacks children, causing progressive loss of muscle control, cancer, and immune system problems.

APS Type 1 Foundation

four leaf clover of different colors

The APS Type 1 Foundation exists to drive research to improve the lives of people with this rare disease, and ultimately find a cure. We support education, awareness and fundraising for critical research in APS Type 1.

Barth Syndrome Foundation

Barth Syndrome Foundation logo.

We are the only world-wide volunteer organization dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS).

CGD Society

cgd society words written as logo

The Chronic Granulomatous Disorder Society (CGD Society) is based in the UK and was originally registered as a charity in 1991 under the name The Chronic Granulomatous Disorder Research Trust. Over the years, the charity has transformed from a small parent support group into a leading global source of information and support for Chronic Granulomatous Disorder (sometimes referred to as Chronic Granulomatous Disease).

CHARGE Syndrome Foundation

logo for charge syndrome

The CHARGE Syndrome Foundation champions the lifelong potential of people with CHARGE syndrome through outreach, education, and research. The CHARGE Syndrome Foundation was founded in 1982 in Columbia, Missouri. Today, the organization offers a biennial international conference, support for clinical and scientific research, and support and resources for families. 

Chronic Granulomatous Disease Association of America

CGD Association of America Logo

The Chronic Granulomatous Disease Association of America (CGDAA) is committed to advocating on behalf of patients, carriers, and families by providing clear, accurate, and independent news and information about CGD and advancing CGD research.

Fanconi Cancer Foundation

Fanconi Cancer Foundation logo.

Previously known as The Fanconi Anemia Research Fund (FARF), The Fanconi Cancer Foundation (FCF) aims to harness hope through the funding of scientific research, advocacy, education, and support services for individuals and families affected by FA and associated cancers.

Hyper IgM Foundation

Hyper IgM Foundation

Hyper IgM Foundation, a non-profit organization, was founded in 2015 by dedicated parents, healthcare professionals and friends. Our mission is to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IgM through research, support, education, and advocacy to families and patients.

IPEX Foundation

IPEX Syndrome Foundation logo.

The IPEX Foundation's mission is to improve the treatment, quality of life, and long-term outlook for children and adults living with IPEX syndrome through research, support, education, and advocacy to families and patients.

Job Research Foundation

fleur de lis in blue with organization title

Our vision is to help find a cure for Job Syndrome by providing the scientific community with additional opportunities to further research the disease.

National Neutropenia Network

National Neutropenia Network logo.

SCID Foundation

SCID foundation logo

At the SCID Foundation, our mission is to empower families affected by Severe Combined Immunodeficiency (SCID) through awareness, education, advocacy, and support.

US Hereditary Angioedema Association

US Hereditary Angioedema Association logo

Founded in 1999, the US HAEA was created by people with HAE and their caregivers who wanted to change the quality of life for others, who like them, had spent years suffering through the pain and misunderstanding of HAE. Today, our organization connects more than 8,000 people with HAE and their caregivers across the United States with valuable support services, advocacy initiatives, medical research, and more. 

Wiskott-Aldrich Foundation

WAS logo

The Wiskott-Aldrich Foundation is a volunteer run, non-profit organization, dedicated to funding research to find improved cures for Wiskott-Aldrich Syndrome, and to support for families living with the disease around the world. We are a group of passionate individuals, each with our own area of expertise, with a common mission to help families and patients with WAS.

XLA Life

dna string with xla life below

XLA Life fosters the unification and empowerment of the global X-Linked Agammaglobulinemia (XLA) community through education, advocacy, and initiatives that aim to improve the overall quality of life for those affected by XLA.

XLP Research Trust

XLP Research Trust logo

The XLP Research Trust promotes and funds research into the cause, management, symptoms and cure for X-linked lymphoproliferative (XLP) disease; raises awareness of the disease; and is a point of contact and support for families affected by XLP.