Genetic and Rare Diseases Information Center

Financial Assistance Information

The National Institutes of Health (NIH) is composed of U.S. government biomedical research institutions and is not authorized to provide routine medical assistance or treatment funds.

These are some resources, however, that may help in finding information on financial aid for medical treatment. Visit these websites frequently for new information as it becomes available. Talk to your state or county health department or social workers at your local hospital for more information on available resources.

This document is divided into five sections, as follows:

Assistance with Paying for Medical Care and Procedures

Department of Health and Human Services (DHHS) [hhs.gov]
The Department of Health and Human Services (DHHS) has information on assistance in paying for medical care for low-income families. Go to "Families & Children."

Contact DHHS directly:

The U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201
Telephone: 202-619-0257
Toll-free: 1-877-696-6775

Government Benefits [benefits.gov]
The official government benefits website. This is a free, confidential tool that locates government benefits.

Health Resources and Services Administration [mchb.hrsa.gov]
The Health Resources and Services Administration (HRSA) of the DHHS website, Maternal and Child Health Bureau (MCHB), whose goal is to ensure equal access to quality health care in a supportive, culturally competent family and community setting.

Contact MCHB Directly:

Maternal and Child Health Bureau (MCHB)
Parklawn Building
Room 18-05
5600 Fishers Lane
Rockville, MD 20857
Phone: 301-443-2170
Fax: 301-443-1797
E-mail: ctibbs@hrsa.gov

Insure Kids Now [insurekidsnow.gov]
The Insure Kids Now website is a resource where you can find free or low cost health insurance for children and teens.

Find A Health Center [findahealthcenter.hrsa.gov]
You can find federally funded free or low cost medical and dental care by using the HRSA Find A Health Center tool.

Hill-Burton Facilities [hrsa.gov]
Hill-Burton facilities provide care to uninsured Americans. To locate a Hill-Burton facility in your area call 900-638-0742.

Top of page

Financial Aid for Medical Treatments

Information on financial aid for medical treatments can also be obtained from the following patient advocacy organizations:

Organization/E-mail Address Phone/ Fax
Families USA
[familiesusa.org]
E-mail: info@familiesusa.org
1201 New York Ave. NW
Suite 1100
Washington, DC 20005
Phone: 202-628-3030
Fax: 202-347-2417
National Patient Advocate Foundation
[npaf.org]
E-mail: action@npaf.org
725 15th St. NW, Tenth Floor
Washington DC, 20005
Phone: 202-347-8009
Fax: 202-347-5579
Association of Maternal and Child Health Programs
(AMCHP) [amchp.org]
E-mail: info@amchp.org
230 M Street, NW
Suite 350
Washington, DC 20036
Phone: 202-775-0436
Fax: 202-775-0061
Patient Advocate Foundation
[patientadvocate.org]
E-mail: help@patientadvocate.org
700 Thimble Shoals Boulevard
Suite 200
Newport News, VA 23606
Phone: 800-532-5274
Fax: 757-873-8999

Family Voices offers resources and communication opportunities on the Internet for people with cognitive and other disabilities, for their families, and for those who provide services and support. This resource has a special interest in the care of children. Resources state by state.

Family Voices [familyvoices.org]
2340 Alamo SE, Suite 102
Albuquerque, NM 87106
Toll-free: 888-835-5669
Phone: 505-872-4774
Fax: 505-872-4780
Online E-mail Contact Form: http://www.familyvoices.org/contact

Resources state by state [familyvoices.org]
Note: Special interest in children

Your child may be eligible to receive social security. To find out if your child qualifies a publication from the Social Security Administration (SSI) [ssa.gov] outlines who may qualify, and how to get this money. It also provides links to the Children's Health Insurance Program (CHIP) in each state.

Top of page

Assistance with Paying for Medications

The Partnership for Prescription Assistance [pparx.org]
The Partnership for Prescription Assistance helps match patients who cannot afford medication to prescription assistance programs that provide free or nearly free medicines to eligible patients.

National Organization for Rare Disorders [rarediseases.org]
The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit, voluntary health organizations serving people with rare disorders. The NORD website includes information on medication assistance programs and networking programs, a resource guide and links to other online resources.

Contact NORD directly:

NORD's Medication Assistance Programs
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Toll-free: 800-999-6673 (voicemail only)
Phone: 203-744-0100
TDD: 203-797-9590
Fax: 203-798-2291
E-mail: orphan@rarediseases.org

Top of page

Assistance with Insurance Issues

Georgetown University Health Policy Institute [healthinsuranceinfo.net]
The Georgetown University Health Policy Institute has written a consumer guide for getting and keeping health insurance for each state and the District of Columbia. These consumer guides are available on the institute's website and are updated periodically as changes in Federal and state policy warrant.

Health Care Choices provides information to the public on selecting and using various types of health insurance and managed care plans.

Health Care Choices
P.O. Box 21039
Columbus Circle Station
New York, NY 10023
Toll-free: 800-368-5779

Centers for Medicare and Medicaid Services [cms.gov]
The website from the Centers for Medicare and Medicaid Services may provide information on qualifying for federal or state assistance for medical treatment.

Kaiser Health News [kaiserhealthnews.org/]
A nonprofit news organization committed to in-depth coverage of health care policy and politics.

Medicaid Waivers

Medicaid waivers are state-run programs that use federal and state funds to pay for health care for people with certain health conditions. In some states, families can apply for a medicaid waiver that waives the family income and looks only at the disabled person's income. This allows people who would otherwise be ineligible for Medicaid to receive medical care. Most states have some type of Medicaid waiver program. To find out more about Medicaid waiver programs in general, as well as specific state programs, visit:

Family Voices [familyvoices.org]
Medicaid Waivers [cms.gov]

Medicare [medicare.gov]
The official U.S. government website for people with Medicare offers information specific to Medicare, including eligibility guidelines and enrollment for Medicare coverage.

Top of page

Participation in Clinical Trials

The National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. To find clinical trials, click on the link below and type the disease name as your search term. After you click on a study, review its "eligibility" criteria to determine its appropriateness. Use the study's contact information to learn more. Check this site often for regular updates.

If there is a clinical trial for which you might be eligible and if you are interested in enrolling, you can find helpful general information on clinical trials on the ClinicalTrials.gov website on the National Human Genome Research Institute website at: Current NHGRI Clinical Studies.

Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are also listed on the ORDR Web pages [rarediseases.info.nih.gov].

Clinical Center [cc.nih.gov]
The NIH Clinical Center's Patient Recruitment and Public Liaison (PRPL) Office assists patients, their families, and physicians by providing information on participating in research being conducted at the Warren Grant Magnuson Clinical Center, the NIH hospital in Bethesda, Maryland.

Organization/E-mail Address Phone/Fax
Patient Recruitment and Public Liaison Office
E-mail: prpl@mail.cc.nih.gov
NIH Clinical Center
Bethesda, MD 20892-2655
Toll-free: 800-411-1222
Fax: 301-480-9793

Important Disclaimer

The materials provided are for informational or educational purposes only and are not intended as a substitute for professional medical care, advice, diagnosis, or treatment. This material does not represent an endorsement of any specific tests and products by the National Human Genome Research Institute or the Office of Rare Diseases Research at the National Institutes of Health. We cannot guarantee the accuracy, completeness, timeliness, or usefulness of the opinions, advice, services, or other information provided. Moreover, we strongly recommend that you seek the advice of your health care provider with any questions regarding your medical care.

Top of page

Last Reviewed: October 29, 2014