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American Association of Kidney Patients (AAKP) - A voluntary patient organization that strives to educate and improve the health and well-being of ESRD patients. Their newest patient educational tool - aakp My Health (TM) provides ESRD patients with tools to monitor healthcare values, keep information about doctor visits, monitor medications, and list contact information; all while learning what such information means. AAKP also has an “Advocacy and Public Policy” section on its Web site that allows patients to locate members of congress, read AAKP’s public comments and correspondence, and view sample letters to congress. American Kidney Fund - This Web site describes the financial assistance programs it provides to kidney patients. The site also contains kidney disease facts, healthy lifestyle tips, and a discussion forum for patients to share experiences. Arizona Kidney Foundation (AKF) - The mission of the AKF is to provide financial and other types of assistance to patients statewide. In addition to details about the types of assistance available, their Web site includes a section on education and awareness as well as a listing of patient services & programs. Centers for Medicare and Medicaid Services (CMS) - Contains Dialysis Facility Compare, information and pamphlets about dialysis and transplant issues, info on Medicare coverage for dialysis and transplant patients, and info about Medi-gap insurance policies. Dept of Health & Human Services (HHS) - Has information on topics including diseases & conditions, drug & food information, and disasters & emergencies. It also has current news updates. Dialysis Patient Citizens - Dialysis Patient Citizens (DPC) is non-profit patient-led dialysis patient organization. DPC advocates for dialysis and pre-dialysis patients and promotes favorable public policy. It works to improve the partnership between patients and caregivers. (866) 877-4242 Federal Emergency Management Agency (FEMA) - Information regarding natural disasters including preparedness guides available for downloading. FistulaFirst.org - This web site provides comprehensive information for patients and professionals about AV Fistulas. Home Dialysis Central - Developed by the Medical Education Institute, this site's goal is to educate patients about home dialysis and its benefits. Includes a listing of US dialysis centers that offer home dialysis, descriptions of various types of home dialysis, patient stories, and discussion boards. Hope Street - Developed by the National Kidney Foundation, Hope Street is a regularly updated graphic novella that, in a very visual way, tells the story of a group of patients and their health care team in a dialysis center. It includes educational tools and encourages feedback from both professionals and patients. Hope Street is accessable in print form as well as online. Kidney End-of-Life Coalition Web Site - This site provides comprehensive and compassionate information to educate patients, families, caregivers, and others about end-of-life care for chronic kidney disease (CKD) patients. Kidney Patient Guide - Includes information on the physical aspects of kidney failure, as well as wider issues such as emotional, social and financial implications. Kidney School™ - An interactive, web-based learning program divided into 20-minute modules. Developed by Life Options, Kidney School™ is designed to help people understand kidney disease and its treatment, adjust to kidney disease, make good medical choices, and live as fully as possible. Life Options Organization - Dedicated to helping people live long and live well with kidney disease. Includes a patient community area, kidney failure glossary, materials for downloading, and a showcase of patient ideas for living well. MEDLINEplus - A service of the National Library of Medicine, this Web site has extensive health information on over 500 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and dictionaries, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials. National Kidney & Urologic Disease Information Clearinghouse - Pamphlets and information about dialysis, transplant, and kidney disease available to be downloaded. National Kidney Foundation (NKF) - Information about advocacy, support groups, education programs and pamphlets about kidney disease, kidney failure, dialysis and transplant. National Kidney Foundation of Colorado, Montana, and Wyoming - This Web site lists programs & services, kidney facts, a calendar of events, and contains lots of other resources including details about support groups and opportunities for volunteers. National Kidney Foundation of Nevada - Local information for Nevada patients can be found on this section of the National Kidney Foundation Web site. National Kidney Foundation of Utah and Idaho - Local information for Utah patients can be found on this section of the NKF Web site. OPTN: U.S. Organ Procurement and Transplantation Network - Maintains the nation's organ transplant waiting list and recipient/donor organ characteristics. Provides data to the government and public, as well as educational tools regarding organ transplants and donors. Preparing for Emergencies - A Guide for People on Dialysis -(pdf - 37 pgs) This is a brochure from the Centers for Medicare and Medicaid Services. Renalnet.org - This site was created to provide a clearinghouse for information on the cause, treatment, and management of kidney disease and ESRD. Renal Support Network - This patient-created site strives to help educate and encourage patients to develop their personal coping skills and employability. Has a patient forum, newsletters, an advocacy page, and health resources. RenalWEB.com - Lots of information about dialysis including: current news, dialysis yellow pages, discussion boards, legislation watch, meetings and conferences, and dozens of links to other dialysis resources. Social Security Administration - Information about Medicare Benefits. Starlight Starbright Children's Foundation - Geared toward pre-teens up through young adults, this site aims to entertain and educate patients about a variety of chronic diseases including kidney disease. Also has an online social network for teens with chronic and life-threatening medical conditions, and their siblings. Users can post pictures, chat, post blogs and bulletins, and find new friends in similar situations. United Network for Organ Sharing (UNOS) - This agency manages the national waiting list for organ transplants, and the Web site is the appropriate place to start when looking for transplant information. Intermountain
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