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This list of resources is divided into the following sections:

Patient Advocacy and Support Organizations

ACCESS Program by Patient Services Incorporated (PSI)

The ACCESS Program by Patient Services Inc. (PSI) is a program that “Advocates for Chronic Conditions, Entitlements and Social Services.” ACCESS is dedicated to helping find solutions to the social and economic problems that confront families facing chronic conditions. The program helps families navigate the often complex maze of state and federal entitlement programs, as well as eligibility for health insurance through state high-risk pools and other alternatives, and through group health insurance continuation under federal law (Consolidated Omnibus Budget Reconciliation Act – COBRA and the Health Insurance Portability and Accountability Act – HIPAA).

Angel Flight
Angel Flight at NIH provides air transportation for patients who are in financial need and cannot afford the cost of air travel.

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.

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.

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.

Children’s Defense Fund
The Children’s Defense Fund is a non-profit organization devoted to children’s issues, including the Children’s Health Insurance Program.

Families USA
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
Family Voices is a national organization that provides information and education concerning the healthcare of children with special health needs.

Health Insurance Resource Center
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.

Insure Kids Now
This site provides links to state child and adolescent health insurance programs.

Invisible Disabilities Association
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.

The Medicine Program
The Medicine Program is a patient advocacy organization helping individuals and families all across America get access to up to 2,500 prescription medications available today for free or nearly free of charge through Patient Assistance Programs.

National Committee for Quality Assurance
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.

National Disabilities Rights Network
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.

National Family Caregivers Association
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.

National Patient Travel Center
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.

Partnership for Prescription Assistance
888-4PPA-NOW (888-477-2669)
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
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.

Patient Notification System
888-UPDATE-U (888-873-2838)
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)
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.

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.

SKIP: Sick Kids Need Involved People
This is an advocacy group which helps families in the state of New York receive financial aid, nursing services and government medical services that they may be entitled to for their chronically ill child.

Government Support and Assistance Programs
This site includes program descriptions and contact information about federal and state assistance programs.

Healthfinder is a Federal website for consumers, developed by the U.S. Department of Health and Human Services together with other Federal agencies. It is a key resource for finding government and nonprofit health and human services information on the Internet.

Hill-Burton Free and Reduced Cost Health Care
In 1946, Congress passed a law that gave hospitals, nursing homes and other health facilities grants and loans for construction and modernization. In return, they agreed to provide a reasonable volume of services to persons unable to pay and to make their services available to all persons residing in the facility’s area. The program stopped providing funds in 1997, but about 300 healthcare facilities nationwide are still obligated to provide free or reduced-cost care.

Medicaid Eligibility Information

Report from The Kaiser Family Foundation
The Kaiser Family Foundation published a comprehensive report in 2015 that provides information on Medicaid eligibility including information on dual eligibility for Medicaid and Medicare and on programs that allow people to work and buy-in to Medicaid. Click here to view the report.

State Health Insurance Assistance Program
State Health Insurance Assistance Program (SHIP) provides counseling services to Medicare beneficiaries. They help assist patients in making educated, informed decisions on their healthcare benefits.

State Programs for Children with Special Needs
States offer individual programs which provide medical assistance for children with special needs. These may offer assistance in covering medical expenses, help with finding a diagnosis, and other services depending on the state.

Education Resources

HEATH Resource Center
The HEATH Resource Center is the national clearinghouse on postsecondary education for individuals with disabilities. It provides information about educational support services, policies, procedures, adaptations and opportunities at American campuses, vocational-technical schools and other postsecondary training sites.

National Information Center for Handicapped Children and Youth
National Information Center for Handicapped Children and Youth (NICHY) is a national information and referral center that provides information on disabilities and disability-related issues for families, educators and other professionals. Specific information on early intervention programs, special education, individualized education programs, education rights and transition to adult life can be found through this organization.

Manufacturers and Assistance Programs

+44 (0) 20 8957 2342
BPL manufactures Gammaplex.

CSL Behring
Care Coordination Center: 800-676-4266, option 5
IgIQ Resource Hotline: 877-355-IgIQ (877-355-4447)
CSL Behring manufactures Hizentra, Carimune and Privigen.

Grifols USA Customer Service: 800-243-4153 and
888-325-8579, option 3
Patient Assistance for Flebogamma: 888.GRIFOLS (888-474-3657)
Gamunex Connexions Program (comprehensive support program): 888-694-2686
Grifols manufactures Flebogamma DIF and Gamunex-C.

Horizon Pharma
Comprehensive Personalized Patient Prescription Advocacy and Support Services (COMPASS) Program
Horizon Pharma manufactures Actimmune.

Medical Inquiries, Reimbursement & Customer Service: 855-353-7466
Kedrion manufactures Gammaked.

Leadiant Biosciences

Product Information: 866-634-2765
Coverage Assistance and Patient Access Program: 877-534-9627
Leadiant Biosciences manufactures Adagen.

Customer Service: 866-766-4860
Reimbursement: 800-554-4440
Octapharma manufactures Octagam.

MyIgSource: 855-250-5111
Shire manufactures HyQvia, Gammagard Liquid, and Gammagard S/D IgA