Other Resources

Rare disease impact more than just the individual with the diagnosis. The needs of the individual and their family frequently go beyond diagnosis and treatment. 

Medicaid

Medicaid is a program supported by both federal and state funds in the U.S. and it is administered on the state level, meaning that eligibility guidelines and benefits available may differ considerably between states. Medicaid is intended to help individuals and families pay their medical expenses and eligibility is primarily based on income although certain factors such as age or disability may be considered. For more information including contact information for your local Medicaid office, visit their website.

Medicare

Medicare is a program supported by the U.S. federal government that provides health insurance for people over 65 years of age or people under 65 years of age with certain disabilities.

State Health Insurance Assistance Program

The State Health Insurance Assistance Program (SHIP) is a US national program that offers one-on-one counseling and assistance to people with Medicare and their families. Through federal grants directed to states, SHIP provides free counseling and assistance via telephone and face-to-face interactive sessions, public education presentations and programs, and media activities.

ClinicalTrials.gov

The US National Institutes of Health (NIH), through its National Library of Medicine (NLM), has developed this site in collaboration with the Food and Drug Administration (FDA). Clinicaltrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions. ClinicalTrials.gov contains tens of thousands of clinical studies sponsored by the National Institutes of Health, other federal agencies, and private industry. Studies listed in the database are conducted throughout the United States and in over 130 countries, and searches may be conducted by diagnosis, by sponsor or by recruitment status. ClinicalTrials.gov provides information about a trial’s purpose, who may participate, locations, and contact information to learn more details. In addition to providing listings, the website offers detailed information to help the reader understand how clinical trials are structured and governed.

National Cancer Institute

The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the U.S. federal government’s principal agency for cancer research and training. The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.

National Center for Complementary and Integrative Health

National Center for Complementary and Integrative Health (NCCIH) is the U.S. federal government’s lead agency for scientific research on the diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine.

National Institute of Arthritis and Musculoskeletal and Skin Diseases

The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases.

National Institutes of Health

The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the United States’ medical research agency—making important discoveries that improve health and save lives. The NIH is the largest source of funding for medical research in the world and is made up of 27 Institutes and Centers, each with a specific research agenda.

United States Department of Health and Human Services

The U.S. Department of Health and Human Services (HHS) is the U.S. federal government’s principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.

United States Social Security Administration

The U.S. Social Security Administration’s mission is to deliver social security services that meet the changing needs of the public. The Administration delivers services through a nationwide network of over 1,400 offices that include regional offices, field offices, card centers, teleservice centers, processing centers, hearing offices, the Appeals Council, and their State and territorial partners, the Disability Determination Services.

Caring Bridge

CaringBridge is a nonprofit organization offering free personalized websites to those wishing to stay in touch with family and friends during significant life events. Their mission is “to bring together a global community of care powered by the love of family and friends in an easy, accessible and private way.” CaringBridge authors can quickly and easily create personalize websites that display journal entries and photographs. Well-wishers visit the site to read updates and leave messages in the Guestbook. For more information, visit their website or call 651.452.7940.

LIVESTRONG Fertility

LIVESTRONG Fertility is part of the LIVESTRONG organization and is dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility. For more information, visit their website or call 855.220.7777.

Caregiver Action Network

The Caregiver Action Network (CAN) is the nation’s leading family caregiver organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge. For more information, call 202-772-5050 or visit their website.

Family Caregiver Alliance

The Family Caregiver Alliance (FCA) is the first community-based nonprofit organization started in the United States to address the needs of families and friends providing long-term care at home. Long-recognized as a pioneer in health services, FCA now offers programs at national, state and local levels to support and sustain caregivers. For more information, visit their website or call 800.445.8106.