Patient Resources &
Disease Education
Patient Education & Financial Resources
Financial assistance
- Medicare
Medicare is the US government’s health insurance program for people over 65. Some people under the age of 65 with certain disabilities may be able to get coverage through Medicare. There are two program options: Medicare Prescription Drug Plan (Part D) or Medicare Advantage (Part C) that can help pay for prescription drugs. You will need to enroll during certain times of the year. http://www.medicare.gov - Medicare Extra Help
If you are covered under Medicare and meet certain income guidelines, you may be eligible for the Social Security Administration’s Extra Help program. This program will help with the cost of monthly medical fees and medicines. http://www.ssa.gov/medicare/prescriptionhelp - Veterans Affairs
With veteran’s benefits, you may be able to get your medications for free or for just a small copayment. Copayment (copay) is the amount an insured person will pay for a healthcare service or medicine at the point of care. http://va.gov - Medicaid
Medicaid is a health insurance program sponsored by states. It is for low income US residents of any age. Your state may have a different name for Medicaid. Each state has different rules that must be followed. http://www.medicaid.gov - Other State Programs
Many states have prescription drug programs that are not part of Medicaid. These programs may be able to help you afford your medicine. Sometimes, a state program is linked to Medicare’s Part D drug plan. http://www.medicare.gov/pharmaceutical-assistance-program/state-programs.aspx
- GovBenefits
- Healthfinder
- Hill-Burton Free and Reduced Cost Health Care
- State Health Insurance Assistance Program
- State Programs for Children with Special Needs
- American Chronic Pain Association (ACPA)
The ACPA was founded in 1980 to provide resources for people coping with chronic pain. http://www.theacpa.org - 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. http://caregiveraction.org/ - 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. http://www.childrensdefense.org/ - 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. https://familiesusa.org/ - Family Voices
Family Voices is a national organization that provides information and education concerning the healthcare of children with special health needs. http://familyvoices.org/ - 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. https://www.healthinsurance.org/ - Insure Kids Now
Insure Kids Now
This site provides links to state child and adolescent health insurance programs. https://www.insurekidsnow.gov/ - 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. https://invisibledisabilities.org/ - 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. http://www.ncqa.org/ - 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. http://www.ndrn.org/ - 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. http://caregiveraction.org/ - National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) is a non-profit organization which provides information, programs and services for thousands of rare medical conditions. https://rarediseases.org/ - 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. http://www.patienttravel.org/ - 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. https://www.patientadvocate.org/ - Patient Notification System
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. http://www.patientnotificationsystem.org/ - 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. http://skipofny.org/
- 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. https://www.heath.gwu.edu/
- Centers for Disease Control and Prevention
http://cdc.gov - Center for Biologics Evaluation and Research, FDA
A division of the Food and Drug Administration (FDA) whose mission is to protect and enhance public health through regulation of biological products to ensure their safety, effectiveness and timely delivery to patients. This agency provides information on biological products, such as blood and plasma, including new product approvals, adverse events, product recalls and withdrawals. https://www.fda.gov/vaccines-blood-biologics - Centers for Medicare and Medicaid Services
The Centers for Medicare and Medicaid Services (CMS) provides information for individuals receiving services from Medicare, Medicaid or SCHIP. http://cms.gov - National Institutes of Health
U.S. Department of Health And Human Services: National Institutes of Health http://www.nih.gov - The National Institutes of Health (NIH) provides information on advances in health, science and medical issues. The following are divisions of NIH:
- National Cancer Institute
National Cancer Institute (NCI) provides the following information about cancer: topics, trials, statistics and research. http://www.cancer.gov - National Heart, Lung and Blood Institute
The National Heart, Lung and Blood Institute (NHLBI) provides leadership for a national program in diseases of the heart, blood vessels, lung, and blood; blood resources; and sleep disorders. https://www.nhlbi.nih.gov/ - National Human Genome Research Institute
The National Human Genome Research Institute (NHGRI) applies genome technologies to the study of specific diseases and the genetic components of complex disorders. http://www.genome.gov - National Institute of Allergy and Infectious Diseases
TThe National Institute of Allergy and Infectious Diseases (NIAID) is provides information on allergy and infectious diseases, as well as primary immunodeficiencies. https://www.niaid.nih.gov/ - National Institute of Child Health and Human Development
The National Institute of Child Health and Human Development (NICHD) provides general information on children’s health issues, including an in-depth booklet on primary immunodeficiencies. https://www.nichd.nih.gov/ - National Institute of Neurological Disorders and Stroke
The mission of NINDS is to reduce the burden of neurological disease – a burden borne by every age group, by every segment of society, by people all over the world. https://www.ninds.nih.gov/ - NIH Clinical Trials
The NIH Clinical Trials site contains current information on clinical trials being conducted, some of which may be pertinent to primary immunodeficiencies. https://www.clinicaltrials.gov/ - NIH Health Information
This is an A-Z index of NIH health resources, clinical trials, MedlinePlus and health hotlines. https://www.nih.gov/health-information - NIH Office of Rare Diseases
The NIH Office of Rare Diseases (ORD) coordinates research on rare diseases and supports research to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today. https://rarediseases.info.nih.gov/ - NIH Research Training and Scientific References
This site contains information about intramural research, Human Embryonic Stem Cell Registry, scientific interest groups, library catalogs, journals, training, labs, scientific computing and more. https://www.nih.gov/research-training
- National Cancer Institute
- National Library of Medicine
The National Library of Medicine (NLM) is the world’s largest medical library. The library collects materials and provides information and research services in all areas of biomedicine and healthcare. https://www.nlm.nih.gov/ - National Office of Public Health Genomics
This site provides updated information on how human genomic discoveries can be used to improve health and prevent disease. It also provides links to Centers for Disease Control and Prevention (CDC) activities in public health genomics. https://www.cdc.gov/genomics/ - U.S. Department of Education
This site contains information for parents about education for children of all ages and abilities. https://www.ed.gov/ - U.S. Department of Health and Human Services
The U.S. Department of Health and Human Services (HHS) is the U.S. government’s principal agency for protecting the health of all Americans and providing essential human services. The site contains information on the department’s numerous federal programs. https://www.hhs.gov - U.S. Department of Labor: Continuation of Health Coverage (COBRA)
COBRA gives workers and their families who lose their health benefits the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances such as voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce and other life events. https://www.dol.gov/general/topic/health-plans/cobra - U.S. Department of Labor, Employment Standards Administration, Wage and Hour Division
Administers and enforces the Family and Medical Leave Act (FMLA) for all private, state and local government employees, and some federal employees. FMLA entitles eligible employees to take up to 12 weeks of unpaid, job- protected leave in a 12-month period for specified family and medical reasons. https://www.dol.gov - U.S. Equal Employment Opportunity Commission
Individuals can find information about the Equal Employment Opportunity Commission (EEOC), its current activities and legislative documents such as The Americans with Disabilities Act (ADA), which protects civil rights in the areas of employment, public accommodation, transportation and telecommunications for people with disabilities, including developmental disabilities. https://www.eeoc.gov - U.S. Social Security Administration
This website contains complete information about Social Security. https://www.ssa.gov