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Other Resources on CKD

If you know of another resource not listed here that you want to share, email us at info@kidneytrust.org.

General Resources Regarding Kidney Disease

  • National Kidney Foundation (NKF)
    Membership organization dedicated to improving the lives of kidney patients through research, education, and service. 800-622-9010, 30 East 33rd Street, New York, NY 10016, www.kidney.org
  • National Kidney Disease Education Program (NKDEP)
    A program to reduce the death and disabilities from kidney disease and its complications, www.nkdep.nih.gov
  • United Network for Organ Sharing (UNOS)
    Maintains the nation’s organ transplant waiting list. 800-243-6667, www.unos.org
  • ESRD Networks
    The 18 regional ESRD Networks work make sure that dialysis and transplant patients receive quality care. Networks collect data on how well patients are doing and use the data to improve quality. Networks also review patient complaints. www.esrdnetworks.org
  • KEY Connections
    An education and outreach program that provides education about kidney disease to people
    with and at-risk for kidney disease and to professionals working with at-risk populations.
    1-888-My-Kidney, www.KeyConnections.com
  • Life Options
    Life Options is a program of research, research-based education, and outreach founded
    in 1993 to help people live long and live well with kidney disease. www.lifeoptions.org

Organizations for Kidney Patients

  • Dialysis Patient Citizens
    DPC is an independent, nationwide, non-profit, patient-governed dialysis patient organization. We are dedicated to improving dialysis patients’ quality of life by developing awareness of dialysis-related issues, advocating for dialysis and pre-dialysis patients, improving the partnership between patients and caregivers, and promoting favorable public policy. 866-877-4242. www.dialysispatients.org
  • Renal Support Network
    The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization established in 1993 to provide 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. www.renalsupportnetwork.org
  • National Kidney Foundation-People Like Us
    People Like Us is a growing movement to empower, educate and enable people with chronic kidney disease (CKD), transplant recipients, donors and family members to become effective advocates on issues related to their health. www.kidney.org/patients/plu
  • American Kidney Fund
    The American Kidney Fund provides direct financial assistance to kidney patients in need,
    and education to those with and at risk for kidney disease. www.kidneyfund.org/index.asp
  • American Association of Kidney Patients
    The 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. www.aakp.org

Organizations For Related Health Conditions

  • American Diabetes Association
    The mission of the American Diabetes Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. www.diabetes.org
  • PKD Foundation
    Dedicated to finding the cause and cure for polycystic kidney disease. 800-PKD-CURE, www.pkdcure.org
  • American Lupus Society
    Helps lupus patients, promotes awareness, and raises funds. 800-331-1802, 260 Maple Court, Suite 123, Ventura, CA, 93003, www.healthy.net/pan/cso/cioi/tals.htm
  • American Heart Association (AHA)
    The American Heart Association is a national voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke, www.americanheart.org
  • Directory of Kidney and Urologic Diseases Organizations
    Lists organizations that represent health professionals involved in the study and treatment of kidney and urologic diseases, http://kidney.niddk.nih.gov/resources/organizations.htm
  • IgA Nephropathy Support Network
    9 G Street, Apt. B, Turner Falls, MA 01376. Phone: (413) 863-8663. Dale M. Hellegers, President
    Mission: To assist patients with IgA nephropathy and their families; to serve as a clearinghouse for dissemination of information about IgA nephropathy; and to promote research for a possible cure.

Treatment Choices

  • CKD and ESRD information
    Contact:     www.davita.com
  • Choosing a Treatment for Kidney Failure
    Contact: NKF. One copy free. #03-52.
  • Choosing a Treatment That’s Right For You
    Contact:     NKUDIC. One copy free. #KU-50. Also in Spanish ( #KU-54.)
  • Home Dialyisis information
    Contact:     www.homedialysis.org



    Hemodialysis

  • What You Need to Know About Hemodialysis
    Contact:     NKF. One copy free. Order #DOQI-110.
  • Home Hemodialysis
    Contact:     NKF. One copy free. #03-19.



    Peritoneal Dialysis

  • Peritoneal Dialysis: An Alternative to Hemodialysis
    Contact:     NKF. One copy free. #03-02. Also in Spanish (#03-44).
  • Peritoneal Dialysis Dose and Adequacy: Quick Facts
    Contact:     NKUDIC. One copy free. #KUI-21.



    Transplants

  • Kidney Transplant: A New Lease on Life
    Contact: NKF. #03-04.
  • Kidney Transplantation: Quick Facts
    Contact:     NKUDIC. One copy free. #KUI-09.
  • What Every Patient Needs to Know
    Contact:     United Network for Organ Sharing (UNOS), 1100 Boulders Parkway, Ste. 500, Richmond, VA 23225. 804-330-8541.

Living with Kidney Disease

  • Coping Effectively: A Guide for Patients and their Families
    Contact:     NKF. One copy free. #05-03.
  • Dialysis Keeps People with Kidney Failure Alive: Are You Getting Adequate Hemodialysis?
    Contact:     NKF. Free.
  • Family Focus (Quarterly newspaper for kidney patients & families)
    Contact: Medicare. #10924.
  • For Patients Only (magazine)
    Contact:     Contemporary Dialysis and Nephrology at 818-704-5555.
  • The Kidney Diseases Dictionary
    Contact:     NKUDIC. One copy free. #KU-138.
  • Living with Kidney Failure: A Guide for Patients and their Families
    Contact:     NKF. One copy free. #05-38.
  • Travel Tips for Kidney Patients.
    Contact: NKF. One copy free. #05-13.

Anemia and Access

  • What You Need to Know About Anemia
    Contact:     NKF. One copy free. #DOQI-113.
  • What You Need to Know About Your Access
    Contact:     NKF. One copy free. #DOQI-112.

Audiotapes and Videotapes

  • Bridging the Gap (Video about treatment choices)
    Contact: NKF - #06-03.
  • It’s Just a Part of My Life—A Kid’s View of Dialysis (Video)
    Contact:     NKF - #05-07.

Diet and Nutrition

  • Diet Guide for the CAPD Patient
    Contact:     AKF. Single copies free. Also in Spanish.
  • Diet Guide for the Hemodialysis Patient
    Contact:     AKF. Single copies free. Also in Spanish.
  • Dining Out with Confidence: A Guide for Renal Patients (Large Print)
    Contact:     NKF. One copy free. #04-05.
  • Nutrition and: Hemodialysis (#04-02), Peritoneal Dialysis (#04-03), Transplantation (#04-04)
    Contact:     NKF.
  • Protein/Calorie Counter
    Contact:     AAKP. Also in Spanish.
  • What You Need to Know About Nutrition and Hemodialysis
    Contact: NKF. One copy free. #K/DOQI-136.
  • What You Need to Know About Nutrition and Peritoneal Dialysis
    Contact:     NKF. One copy free. #K/DOQI-140.
  • Your Renal Guide to the New Food Label
    Contact:     NKF. One copy free. #04-18.
  • Additional cookbooks are listed at www.ikidney.com/recipes.php?criteria=Recipes

Exercise and Fitness

  • Staying Fit with Kidney Disease
    Contact:     NKF. One copy free. #05-02.

Sexuality

  • Sexuality and Chronic Kidney Disease.
    Contact:     NKF. One copy free. #05-04.
  • Treating Impotence: A Sexual Problem in Men
    Contact:     NKF. One copy free. #02-13.
  • Impotence
    Contact: NKUDIC. #KU-99. Also in Spanish.

Employment and Insurance

  • Working with Kidney Disease: Rehabilitation and Employment
    Contact:     NKF - #05-03R.
  • Financial Resources for Kidney Patients
    Contact:     NKF. One copy free. #05-39.

Medicare and Disability

  • Medicare. 800-633-4227, www.medicare.gov
  • Medicare Coverage of Kidney Dialysis and Kidney Transplant Services: A Supplement to Your Medicare Handbook
    Contact:     Medicare. #10128 (Large Print: #10128-LE)
  • Social Security Administration. 800-772-1213. (TTY: 800-325-0778). www.ssa.gov
  • The Americans with Disabilities Act (1990)
    Contact:     Civil Rights Division, U.S. Department of Justice, P.O. Box 66118, Washington, DC 20035-6118, or call 212-514-0301.
  • Disability Rights, Education, and Defense League. Offers attorney referrals and information on the Americans with Disabilities Act. 800-466- 4232. www.dredf.org
  • The following resources are available from the U.S. Department of Health and Human Services, Social Security Administration, Baltimore, MD 21235, (800) 772-1213, or www.ssa.gov/pubs. (All SSA materials are available in Spanish.)
    • Medicare. (#05-10043)
    • Retirement Benefits. (#05-10035)
    • Reviewing Your Disability. (#05-10068)
    • Social Security: Basic Facts. (#05-10080)
    • Social Security Disability Programs Can Help. (#05-10057)
    • Social Security: Understanding the Benefits. (#05-10024)
    • Supplemental Security Income. (#05-11000)
    • Survivors. (#05-10084)
    • Understanding SSI. (#17-008)
    • Work Incentives for People With Disabilities. (Red Book) (#64-030)
    • Working While Disabled…How We Can Help. (#05-10095)
    • Your Right to Representation. (#05-10075)
    • The Appeals Process. (#05-10141)
    • A Desktop Guide to Social Security and SSI Work Incentives. (#05-11002)
    • A Desktop Guide to SSI Eligibility Requirements. (#05-11001)
    • Disability. (#05-10029)
    • A Guide to SSI for Groups and Organizations. (#05-10015)