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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 website 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 website 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 website 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 website provides comprehensive information for patients and professionals about AV Fistulas. HealthCare.gov - Helps people to find health care coverage, clearly explains the Affordable Care Act and the multiple changes to health insurance such as new pre-existing condition insurance plans, health insurances exchanges, and the timeline for when new benefits are available. 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. Kidney End-of-Life Coalition website - 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™ -This free online school is supported by a grant from Fresenius Medical Care the largest dialysis service provider in the world. Topics include treatment options, diet, anemia, heart health, lab tests, sexuality, long-term complications, and much more. Kidney School is intended to help patients take charge of their kidney health. 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 website 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 website 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 Southern California and Southern Nevada - Local information for Southern Nevada patients can be found on this section of the National Kidney Foundation website. National Kidney Foundation of Northern California and Northern Nevada - Local information for Northern Nevada patients can be found on this section of the National Kidney Foundation website. National Kidney Foundation of Utah and Idaho - Local information for Utah patients can be found on this section of the NKF website. The Organ Procurement and Transplantation Network (OPTN) - 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. Phosphorus in Fast Foods - Lists popular fast food restaurants and those items on their menu that contain phosphorus additives. Preparing for Emergencies - A Guide for People on Dialysis - (pdf - 37 pgs) This is a brochure from the Centers for Medicare and Medicaid Services. 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. Transplant Living - A project of the United Network for Orgain Sharing, contains a slew of information about transplants and the transplantation process. TransWeb.org - TransWeb features real people's experiences, the top 10 myths about donation, a donation quiz, frequently asked questions with answers, as well as educational reference and videos of U.S. and World Transplant Games United Network for Organ Sharing (UNOS) - This agency manages the national waiting list for organ transplants. The website contains educational information for patients and professionals regarding donation and transplantation as well as detailed reports on transplants performed. Intermountain
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