www.kidneynca.org
National Kidney Foundation (NKF)
NKF Site provides resources for patients, event information and program details.
San Francisco main phone: 415-543-3303
Sacramento main phone: 916-922-6681
General e-mail inquiry:
info@kidneynca.org
www.kidney.org
National Kidney Foundation, National Office -- The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and wellbeing of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
Main phone: 1-800-622-9010
Contact form page:
http://www.kidney.org/about/contact.cfm
Find an NKF branch near you:
http://www.kidney.org/about/offices.cfm
A to Z Health Guide:
http://www.kidney.org/atoz/index.cfm
Dialysis
www.medicare.gov/Dialysis
Medicare Dialysis Facility Compare -- This website provides important information and resources for patients and family members who want to learn more about chronic kidney disease and dialysis. Look at the information on Dialysis Facility Compare carefully. Use it with other information as you compare facilities and decide where to receive dialysis.
Dialysis Facility Publications link:
http://www.medicare.gov/Dialysis/Static/Publications.asp?dest=NAV|Home|Resources|Publications#TabTop
www.dialysiscenters.org
DialysisCenters.org -- A search resource for finding dialysis centers anywhere in the world.
Contact page:
http://www.dialysiscenters.org/contact.cfm
Phone: 702-448-4417
www.homedialysis.org
Home Dialysis Central -- a one-stop, online source of up-to-date, unbiased information about home dialysis-in all its forms-for people with kidney disease, their families, and the healthcare professionals who provide kidney disease care.
Contact page:
http://www.homedialysis.org/contact/
Main phone: 608-833-8033
www.davita.com/diethelper
DaVita Diet Helper -- This site helps patients plan, prepare and track their kidney-friendly meals, depending on their particular diet prescription. The site also has a number of helpful links found at the bottom of the page.
Contact page:
http://www.davita.com/about/contact/
Main phone: 1-800-244-0680
www.culinarykidneycooks.com
Culinary Kidney Cooks -- These cookbooks are excellent resources for anyone suffering End Stage Renal Disease (ESRD) and any patient who is on dialysis. These kidney-friendly meals are designed to be flavorful and tasty-- a real improvement on typically bland renal diets.
Main phone: (714) 842-4684
mail inquiries:
Eric.Brooks@CulinaryKidneyCooks.com
www.caldialysis.org
California Dialysis Council -- (CDC) is a statewide organization that continues to address legislative and clinical issues representing the needs of the renal community. CDC is forefront in addressing concerns that affect not only California, but the nation, in managing renal patients and providers.
Renal Links page:
http://www.caldialysis.org/renal_links.htm
Legislative Link:
http://www.caldialysis.org/LEGISLATIVE%20_STATUS.htm
www.fistulafirst.org
Arteriovenous Fistula First -- AV Fistula First is a coalition working to increase the use of AVFs by individuals who need hemodialysis.
Patient Resource page:
http://www.fistulafirst.org/patients/resources.php
Contact page:
http://www.netformhost.com/forms/fistulafirst_contact_form.php
www.dialysispatients.org
Dialysis Patient Citizens -- DPC is working to improve the quality of life for all dialysis patients through education and advocacy. We are a nationwide, non-profit, patient-led dialysis organization with membership open only to dialysis and pre-dialysis patients and their families.
Main phone: 866-877-4242
General e-mail inquiries:
dpc@dialysispatients.org
MediCal/Medicare
www.cahealthadvocates.org/HICAP
Health Insurance Counseling & Advocacy Program (HICAP) -- is administered by the CA Department on Aging and provides direct assistance to consumers already on Medicare or trying to select Medicare or a Long Term Care Insurance plan: 1-800-434-0222.
www.esrdnet17.org
Western Pacific Renal Network -- Network #17 -- is involved in the assurance of quality care to individuals with End-Stage Renal Disease (ESRD), and also in the collection and validation of information about and treatment of persons with ESRD. Medicare (CMS) contracts with and funds 18 ESRD Network organizations covering all 50 states and U.S. territories. The territory of Network #17 includes Northern California, Hawaii, Guam, Mariana Islands and American Samoa. ESRD is the only disease which entitles an individual to Medicare benefits (with some minimum requirements).
Toll-free for Patients: 1-800-232-3773
www.cms.hhs.gov
Centers for Medicare and Medicaid -- This site is provided by the Dept. of Health & Human Services. Everything pertaining to Medicare and Medicaid is here-- as well as SCHIP, low-cost health insurance.
Site Tools & Resources page:
http://www.cms.hhs.gov/home/tools.asp
Links to State Departments of Health:
http://www.cms.hhs.gov/apps/contacts/default.asp?cboState=all&cboContactType=2&optSrchType=0&cboOrgType=AY&txtOrgName=&submit1=Show+Contacts
www.medicare.gov
Official Site for People With Medicare -- Provides info on all Medicare health plans, prescription drug plans, eligibility and coverage information.
Link to general Medicare Coverage page:
http://www.medicare.gov/Coverage/Home.asp
www.medicare.gov/publications/pubs/pdf/esrdcoverage.pdf
Medicare Coverage of Kidney Dialysis and Kidney Transplant Services -- a 63-page document specifically dedicated to coverage for kidney patients.
www.cahealthadvocates.org
California Health Advocates -- dedicated to Medicare advocacy and education for Californians. This web site provides accurate, unbiased information about Medicare benefits for people who live in California and resources for professionals working directly with California's Medicare beneficiaries.
Main office phone: (916) 231-5110
Transplant
www.ctdn.org
California Transplant Donor Network -- Provides services and resources concerning organ and tissue donation. They provide clinical services, hospital services, family support and community outreach. CTDN works with over 160 donor hospitals in Northern and Central California, as well as Northern Nevada.
Main office phone: 510-444-8500
General e-mail inquiries:
info@ctdn.org
Additional Resources:
Donation Information page:
http://www.ctdn.org/resources_public.php
Donor Family Information page:
http://www.ctdn.org/resources_donorfamilies.php
Recipient Information page:
http://www.ctdn.org/resources_recipients.php
www.donatelifecalifornia.org
Donate Life California -- The registry to sign up to be an organ and tissue donor in California.
Organ Donation FAQs page:
https://www.donatelifecalifornia.org/about/facts/faq/
General phone: (866) 797-2366
General e-mail inquiries:
info@donatelifecalifornia.org
www.transplantliving.com
Transplant Living -- This site is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services. They provide information concerning the before, during and after transplantation-- as well as info on pediatric transplantation and living donations. There is also an extensive directory by state of support groups, plus links to patient resources.
Patient Information:
http://www.transplantliving.com/community/aboutus/default.aspx
General Info Contact page:
http://www.transplantliving.com/contact.aspx
www.kidneytransplant.org/patientguide/index.html
A Patient's Guide to Kidney Transplant Surgery, Presented by the USC Kidney Transplant Program -- Learn all about kidneys and what transplant surgery entails. Gives information on what to expect pre-op and post-op.
Link to list of kidney transplant resources:
http://www.kidneytransplant.org/patientguide/sources-centers.html
Main phone: (323) 442-5908
General e-mail inquiries:
usckidney@surgery.hsc.usc.edu
www.unos.org
United Network of Organ Sharing -- UNOS administers the nation's only Organ Procurement and Transplantation Network (OPTN), established by the U.S. Congress in 1984.
UNOS "What We Do" page:
http://www.unos.org/whatWeDo/
Patient Resources page:
http://www.unos.org/resources/
Donation related links:
http://www.unos.org/resources/links.asp
Patient/ General Public phone: (888) 894-6361
Patient/ General Public contact page:
http://www.unos.org/whatWeDo/contact_patientServices.asp
Financial Assistance
www.transplantfund.org
National Transplant Assistance Fund -- NTAF has helped families raise more than $50 million for uninsured medical expenses related to transplantation and catastrophic injury. NTAF helps patients and their families organize, launch and sustain grassroots fundraising campaigns, providing fiscal accountability for the funds raised and weekly disbursements for life-saving and life-sustaining medical care.
1-800-642-8399
www.kidneyfund.org
American Kidney Fund -- The mission of the American Kidney Fund (AKF) is to provide direct, treatment-related financial assistance to kidney patients who are in need, and to provide health education to people with, or at-risk for, kidney disease.
Patient Grants page:
http://www.kidneyfund.org/patient-grants/
Kidney Health page:
http://www.kidneyfund.org/kidney-health/
Patient Services phone: 800-638-8299
Kidney Health phone: 866-300-2900
www.livingdonorassistance.org
National Living Donor Assistance Center -- Provides financial assistance to those making a living donation. Preference is given to those with fewer financial resources.
General Donation links:
http://www.livingdonorassistance.org/resources/default.aspx
Main phone: 703.414.1600
General e-mail inquiries:
NLDAC@livingdonorassistance.org
www.kidneyfoundationofca.com
Kidney Foundation of California -- the Kidney Foundation of California, through its patient assistance program provides grants (in the form of checks) to patients so they can purchase needed items for themselves. These checks will be written to the patients, but sent to the requesting social worker or dietitian for distribution.
Main phone: 562-493-0898
General e-mail inquiries:
cakidneyfdn@mindspring.com
Education
www.kidneyschool.org
Kidney School -- an interactive, web-based learning program in 20-minute modules. It was designed to help people learn what they need to know to understand kidney disease, its treatments, adjust to kidney disease, make good medical choices, and live as fully as possible. The program is self-paced and FREE. This program is a project of Life Options (see below).
www.nkdep.nih.gov/patients/index.htm
National Kidney Disease Education Program -- NKDEP is an initiative of the National Institutes of Health, designed to reduce the morbidity and mortality caused by kidney disease and its complications. NKDEP aims to raise awareness of the seriousness of kidney disease, the importance of testing those at high risk (those with diabetes, high blood pressure, or a family history of kidney failure), and the availability of treatment to prevent or slow kidney failure.
General e-mail inquiries:
nkdep@info.niddk.nih.gov
www.lifeoptions.org
Life Options -- a program of research, research-based education and outreach founded in 1993 to help people live long and live well with kidney disease. A national panel of doctors, researchers, patients, nurses, social workers, dietitians and ESRD Network directors reviews all Life Options materials and helps guide research.
Booklets:
http://www.lifeoptions.org/catalog/catalog.php?prodCat=booklets
Fact Sheets:
http://www.lifeoptions.org/catalog/catalog.php?prodCat=teachingTools
Main phone: (800) 468-7777
Contact form:
http://www.lifeoptions.org/contact.php
www.nephrologychannel.com
Nephrology Channel -- Developed and monitored by board-certified physicians, Nephrology Channel provides comprehensive, trustworthy information about conditions that affect the kidneys, such as kidney cancer and nephritic syndrome, as well as procedures, such as dialysis. Nephrology Channel is a medical information website of Healthcommunities.com, Inc.
Contact page:
http://www.nephrologychannel.com/contactus.shtml
www.kidneyoptions.com
Kidney Options -- Kidney Options is an educational resource for people who have or know people who have kidney disease. Kidney Options is also a resource for health care professionals who guide patients and their families to the best treatment option for them.
Site map:
http://www.kidneyoptions.com/sitemap.html
www.kidneypatientnews.org
Kidney Patient News -- sponsored by the Patient Services Department of the Renal Network, Inc. (ESRD Network 9/10). It was designed to meet the needs of kidney patients and their families in the Network-area states of Indiana, Illinois, Kentucky and Ohio. However, most of the information, materials and resources on this site are for all who wish to learn more about kidney disease, treatment options and care.
Main phone: 317-257-8265
Patient Line: 1-800-456-6919
General e-mail:
info@nw10.esrd.net
Emergency Response
www.kcercoalition.com
Kidney Community Emergency Response -- KCER is the leading authority on emergency preparedness and response for the kidney community.
ESRD National Disaster Info & Coalitions:
http://www.kcercoalition.com/coalitions.htm
Main phone: (813) 383-1530
General e-mail inquiries:
kcer@nw7.esrd.net
Patient-Run Organizations
www.rsnhope.org
Renal Support Network (RSN) -- The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD). RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them (and their family members) to take control of the course and management of the disease. A vital role of RSN is to provide lawmakers and policymakers with the patients' perspective on the needs and capabilities of people with CKD.
Main phone: (818) 543-0896
Contact page:
http://www.rsnhope.org/about/contact.php
www.aakp.org
American Association of Kidney Patients -- The American Association of Kidney Patients (AAKP) is a national non-profit organization founded by kidney patients for kidney patients. We strive to educate and improve the health and wellbeing of chronic kidney disease (CKD) patients, people on hemodialysis, peritoneal dialysis and transplant recipients.
AAKP Renal Links:
http://www.aakp.org/links/links/
Main phone: 800-749-2257
General e-mail inquiries:
info@aakp.org
www.dialysispatients.org
Dialysis Patient Citizens -- DPC is working to improve the quality of life for all dialysis patients through education and advocacy. We are a nationwide, non-profit, patient-led dialysis organization with membership open only to dialysis and pre-dialysis patients and their families.
Main phone: 866-877-4242
General e-mail inquiries:
dpc@dialysispatients.org
Kidney Cancer
www.ckcc.org
The California Kidney Cancer Foundation -- The California Kidney Cancer Center research activities are directed at an ongoing exploration of the immunotherapy of kidney cancer. We believe that some of the lessons learned from kidney cancer treatment may be relevant to the treatment of other forms of cancer. The Center research activities are funded by the California Kidney Cancer Foundation, a nonprofit foundation.
Phone: 415-885-8600
www.kidneycancer.org
Kidney Cancer Association -- Since it was established in 1990, consistent with the vision of the organization's founder, Eugene P. Schonfeld, Ph.D., the KCA's plan of work continues to be executed in these primary areas: Education, Research and Advocacy.
Main phone: 202-280-2371
www.cancer.org
American Cancer Society -- 1-800-ACS-2345
The American Cancer Society is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer through research, education, advocacy and service.
http://www.cancer.org/docroot/CRI/CRI_2_1x.asp?dt=22 -- specific info on kidney cancer
Other Resources
www.211.org
2-1-1 -- Is a service provided by the United Way in order to connect those in need to essential services.
Search 211 Call Centers: http://www.211.org/ReferWeb/MainForm.aspx
www.cdc.gov
Centers for Disease Control and Prevention -- A useful source for general information on any health condition-- and an excellent resource for various data and statistics.
CDC's National Center for Health Statistics link:
www.cdc.gov/nchs
U.S. Obesity Trends page:
www.cdc.gov/nccdphp/dnpa/obesity/trend/maps
Main phone: 800-232-4636
General e-mail inquiries:
cdcinfo@cdc.gov
www.nih.gov
National Institutes of Health -- the NIH site offers information on health, research and statistics. The NIH is THE research agency of the United States government so it has a vast number of links and resources.
NIH's Health Info page:
http://health.nih.gov/
www.ncbi.nlm.nih.gov/sites/entrez
National Institutes of Health, Pub Med -- A resource service of the United States National Library of Medicine and the National Institutes of Health. Patients can look up any number of health topics found in published journals.
www.who.int/en
World Health Organization -- WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.
Data & Statistics page:
http://www.who.int/research/en/
Health Topics page:
http://www.who.int/topics/en/
www.diabetes.org/type-1-diabetes/kidney-disease.jsp
American Diabetes Association -- This page explains the link between diabetes and kidney disease.
Main phone: 1-800-342-2383
General e-mail inquiries:
AskADA@diabetes.org
Main phone: 1-866-454-3639
www.kidney.niddk.nih.gov
National Kidney & Urologic Diseases Information Clearinghouse -- the NKUDIC site provides information resources, publications, referrals and exhibits at professional gatherings.
Reference Collection page:
http://catalog.niddk.nih.gov/resources/
Main phone: 1-800-891-5390
General e-mail inquiries:
nkudic@info.niddk.nih.gov
www.nhlbi.nih.gov/health/public/heart/obesity/wecan
National Heart Lung and Blood Institute, We Can! Program -- "Ways to Enhance Children's Activity & Nutrition" is a national program designed for families and communities to help children maintain a healthy weight. The program focuses on three important behaviors: improved food choices, increased physical activity and reduced screen time.
We Can! Learn It page:
http://www.nhlbi.nih.gov/health/public/heart/obesity/wecan/learn-it/index.htm
www.medlineplus.gov
Medline Plus -- an excellent overall resource on over 750 health topics.
Kidney & Urinary System:
http://www.nlm.nih.gov/medlineplus/kidneysandurinarysystem.html
www.webmd.com
WebMD -- all-around general health information website.
Acute Renal Failure page:
http://www.webmd.com/a-to-z-guides/acute-renal-failure-topic-overview
Chronic Kidney Disease page:
http://www.webmd.com/a-to-z-guides/chronic-kidney-disease-topic-overview
www.uniteforsight.org/freeclinics.php
Unite for Sight -- Free Clinics provide free and low-cost health services to the medically underserved and uninsured. Unite for Sight compiles information about free clinics located throughout the United States. Included are the locations of free clinics in addition to phone numbers and a list of free services provided.
General e-mail inquiries:
ufs@uniteforsight.org
American Medical Association -- Doctor Finder- 1-800-621-8335
www.griefhelpsacramento.com
Grief Support Groups -- Sacramento area
General Book Resource
For "Living Well with Kidney Disease" (Previous addition was called When Your Kidneys Fail):
www.kidneysocal.org/book_order.html or at
www.amazon.com
Articles
www.emedicine.com/nephrology/index.shtml
eMedicine Nephrology Articles -- Here you will find information on any sort of kidney disorder. The site is geared toward medical professionals, but patients and the interested public will find these articles helpful as well.
www.emedicinehealth.com/chronic_kidney_disease/article_em.htm
eMedicine Health, Chronic Kidney Disease -- This medical search site provides general information. Has links to WebMD and MedicineNet.
www.diabetes.org/uedocuments/NationalDiabetesFactSheetRev.pdf
National Diabetes Fact Sheet (2005) -- A 10-page documents on the basics of diabetes.
www.webmd.com/a-to-z-guides/understanding-kidney-disease-basic-information
WebMD, Kidney Disease -- general information on kidney disease.
www.medicinenet.com/kidney_disease_hypertension-related/article.htm
MedicineNet.com article on High Blood Pressure and Kidney Disease.
Public Health Departments
San Mateo County Public Health Dept. -- 1-650-573-2757
www.co.sanmateo.ca.us/smc/department/home/0,,1954_2139,00.html
San Francisco Dept. of Public Health -- 1-415-554-9000
www.dph.sf.ca.us
Sacramento Dept. of Health & Human Services -- 916-875-5881
www.sacdhhs.com
Alameda County Public Health Dept. -- 510-267-8000
www.acphd.org
Contra Costa County Health Services -- 925-957-5400
www.cchealth.org/groups/public_health/
Solano County Health & Social Services Dept. -- 707-784-8600
www.solanocounty.com/Department/Department.asp?NavID=87
Marin County Health & Human Services -- 415-499-3696
www.co.marin.ca.us/depts/HH/Main/index.cfm
Napa County Public Health -- 707-253-4270
www.co.napa.ca.us/Gov/Departments/DeptDefault.asp?DID=40000
Santa Clara County Public Health Dept. -- 408-792-5050
www.sccgov.org/portal/site/phd/
Sonoma County Public Health Division -- 707-565-4401
www.sonoma-county.org/health/ph/index.htm
Fresno County Dept. of Public Health -- 559-445-3249
www.co.fresno.ca.us/Departments.aspx?id=128
Yolo County Health Dept. -- 530-666-8645
www.yolocounty.org/Index.aspx?page=65
