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 AAKPs
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.
Caring Connections - This Web site is an initiative of the National Hospice and Palliative Care Organization (NHPCO) and provides a wide range of free materials about end-of-life care including State Specific Advance Directive Documents.
Centers
for Medicare and Medicaid Services (CMS) - Contains Dialysis
Facility Compare, information and pamphlets about dialysis
and transplant issues, Medicare coverage for dialysis and
transplant patients (including prescription drug coverage), and 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.
Federal
Emergency Management Agency (FEMA) - Information regarding natural
disasters including preparedness guides available for downloading.
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.
iKidney
- Features Community
Events, On-line Newsletter, Kids Corner, Lifestyle Assistance Articles,
Nutritional Compliance Tips, Renal Recipes, Nutrient Charts, Journal
Articles, Nephrology Incite, and more.
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.
NephroWorld.com
- "The whole world of Nephrology," information about kidney
disease, dialysis, and transplants.
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.
Polycystic Kidney Disease Foundation - The PKD Foundation is dedicated to promoting research to find a cure for polycystic kidney disease (PKD) and improving the care and treatment of those it affects.
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 (RSN)- RSN is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD). This Web site provides a variety of resources to help patients develop their personal coping skills and special talents.
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.
TransWeb: All About Transplantation and Donation - TransWeb features news and events, real people's experiences, the top 10 myths about donation, a donation quiz, and a large collection of questions and answers, as well as a reference area with everything from articles to videos.
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.
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505
San Marin Dr. Bldg. A, Suite 300, Novato, CA 94945
Phone: 415-897-2400
Administration Fax: 415-897-2422
Data Fax: 415-897-2443
Toll-free for Patients: 1-800-232-3773
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