Patient Resources As with many under-diagnosed diseases, getting the care and support you need can be challenging.  In order to receive the best care possible, it's vital you must become your own healthcare advocate.  The objective of this section is to help you find the resources and information you will need to support your efforts. General Resources Medical Dictionaries One of the primary tools you will require as you learn more about FMD is a health dictionary.  You will run across many medical terms that will be new to you.  This link has a number of dictionary resources to help.   US News - Best Hospitals How does your hospital rank and where will you receive the best care. Online Medical Information - Research healthfinder This site is operated by the US Dept. of Health and Human Services.  This is one of the most comprehensive sites on the web for patient information.   eMedicine Launched in 1996, www.eMedicine.com comprises the largest and most current Clinical Knowledge Base available to physicians and other healthcare professionals.   VascularWeb This site is provided by the Society for Vascular Surgery.  This link will lead you to some very helpful information of tests and treatments that are common to FMD patients.  The information is presented in a very user friendly manner.   National Women's Health Resource Center, Inc. Healthywomen.org is the one-stop shop for women's health information on the web. This site includes frequently asked questions and consumer tips on fitness, nutrition and disease prevention.   Medline Plus MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials.   Disease Conditions Medical Resource for all diseases and conditions information - cancer, neurological disorders, birth defects, AIDS, alzheimer's.   Health Organizations NORD - National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.   National Stroke Association The National Stroke Association (NSA) provides education, services, and community based activities in prevention, treatment, rehabilitation and recovery.  Their site provides some very informative patient information on stroke.   American Stroke Association The American Stroke Association is a division of the American Heart Association and offers a wide array of programs, products and services, from patient education materials to scientific statements.   National Kidney Foundation The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.   American Association of Kidney Patients American Association of Kidney Patients (AAKP) exists to serve the needs, interests and welfare of all kidney patients and their families. Its mission is to improve the lives of fellow kidney patients and their families by helping them to deal with the physical, emotional and social impact of kidney disease. Angel Flight Angel Flight is a non-profit charitable organization created by a group of pilots to arrange free air transportation for any legitimate, charitable, medically related need.  This service is available to individuals and health care organizations.     National Stroke Foundation (Australia) The National Stroke Foundation is a not-for-profit organisation that works with the public, government, health professionals, patients, carers and stroke survivors to reduce the impact of stroke on the Australian community.     Government Resources   Medicare The official US government site for people who have Medicare benefits.   NIH - Office of Rare Diseases The Office of Rare Diseases (ORD) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH). On November 6, 2002, the President established the Office in statute (Public Law 107-280, the Rare Diseases Act of 2002). A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease.   National Institute of Diabetes and Digestive and Kidney Diseases Part of the National Institutes of Health.  This is the Institute responsible for research of kidney disease.   Food and Drug Administration The FDA is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines and foods more effective, safer, and more affordable; and helping the public get the accurate, science-based information they need to use medicines and foods to improve their health.   National Library of Medicine The National Library of Medicine is a resource provided by the National Institutes of Health and is considered the most comprehensive library of medical information.   Social Security Administration Official link to the Social Security Administration.   Health Insurance   Health Insurance (healthfinder) This site is operated by the US Dept. of Health and Human Services.  You will find helpful links to Medicaid and Medicare information   Medicare The official US government site for people who have Medicare benefits.   Social Security Administration Official link to the Social Security Administration.   Online Health Insurance Source for affordable health insurance quotes from a variety of health insurance providers. Miscellaneous Links Mel Parker Songwriter The songs of Mel Parker blend the great traditional and classic sounds with the soul of country, pop, rock and rhythm and blues.  A portion of the proceeds from the sale of this CD go to the FMDSA.  Click here and take a listen   Kinetic Muscles, Inc KMI was incorporated in May 2001.  Based in Tempe Arizona, KMI has developed the foundation for a line of products to assist physical therapists with repetitive practice therapy for stroke patients and other similar hemiplegic conditions. Discover Mobility Discover Mobility is a provider of products that help those with mobility problems regain their freedom.  Their innovative products consist of Vans, Scooters, Electric Vehicles, Golf Carts, and Durable Medical Products. Needy Meds Help with the cost of medications. Also see RxAssist for information about individual US State Drug Assistance Programs.

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