National Patient Resources

Do you know of a great renal resource that doesn't yet appear on our list?
Please email us at info@remove-this.RSNhope.org and tell us about it!

Renal Support Network (RSN)
Renal Support Network (RSN) values people with kidney disease and helps them become self-sufficient through education, advocacy and employment resources. 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. A vital role of RSN is to provide lawmakers and policymakers with the patients’ perspective on the needs and capabilities of people with CKD.
Phone:    (818) 543-0896
Email:     info@RSNhope.org
Website: www.RSNhope.org

Administration on Aging
The mission of the Administration on Aging is to maximize the independence, well-being, and health of older adults, people with disabilities across the lifespan, and their families and caregivers.
Phone: (202) 619-0724
Email: aclinfo@acl.hhs.gov
Website:  www.aoa.org

Alport Syndrome Foundation

The mission of the Alport Syndrome Foundation, launched in 2007,  is to educate and support patients and families that have been affected by this genetic kidney disease with the goal of funding research to find more effective treatment protocols and a cure. The website provides information on Alport Syndrome, medical resources, and a forum where patients can communicate with each other based on their experiences.
Phone: (212) 798-4665
Email: slagas@alportsyndrome.org
Website:  www.alportsyndrome.org

American Association of Kidney Patients (AAKP)
The focus of the AAKP website is to inform patients and family members of the association and the programs that they offer to their members. It provides renal-specific information on patient education, conventions, and newsletters that assists patients in becoming active participants in planning and managing their disease state.
Phone:    (813) 636-8100
Toll-free: (800) 749-2257
E-mail:    info@aakp.org
Website: www.aakp.org

American Association of People with Disabilities (AAPD)
AAPD is the largest nonprofit cross-disability member organization in the US. Its main goal is to ensure economic self-sufficiency and political empowerment for the more than 56 million Americans with disabilities. AAPD works in a coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973.
Toll-free: (800) 840-8844
Website: www.aapd.com

American Diabetes Association (ADA)
The ADA is a nonprofit health organization providing diabetes research, information, and advocacy. It conducts programs in all 50 states and the District of Columbia. ADA’s mission is to prevent and cure diabetes, the leading cause of kidney failure, and to improve the lives of everyone affected by the disease.
Toll-free:    (800) 232-3472
E-mail:       AskADA@diabetes.org (for diabetes-related questions)
Website:    www.diabetes.org

American Kidney Fund (AKF)
The AKF is a voluntary health organization providing direct financial assistance for the benefit of kidney patients supported by comprehensive educational programs, clinical research, and community service projects. It has helpful information on financial assistance programs, lifestyle ideas, and kidney disease facts.
Phone:       (301) 881-3052
Toll-free HelpLine:    (800) 638-8299
E-mail:        helpline@akfinc.org
Website:     www.akfinc.org

American Nephrology Nurses Association (ANNA)
ANNA is a professional organization that strives to:
· Develop high standards of patient care;
· Educate its practitioners;
· Stimulate research;
· Disseminate new ideas through the field;
· Promote interdisciplinary communication and cooperation; and
· Address issues encompassing the practice of nephrology nursing.
Phone:      (856) 256-2320
E-mail:       anna@ajj.com
Website:    www.annanurse.org

American Society of Hypertension (ASH)
ASH is a forum to provide information on research and clinical developments regarding high blood pressure, the second leading cause of kidney failure, and related cardiovascular diseases.
Phone:        (212) 481-9810
E-mail:       ash@ash-us.org
Website:     www.ash-us.org

American Society of Nephrology (ASN)
The ASN was founded in 1967 as a nonprofit corporation to enhance and assist the study and practice of nephrology, to provide a forum for the promulgation of research, and to meet the professional and continuing education needs of its members.
Phone:        (202) 659-0599
E-mail:       email@asn-online.org
Website:    www.asn-online.org  
 
American Society of Pediatric Nephrology (ASPN)
The ASPN was founded in 1969 to promote optimal care for children with renal disease and to disseminate advances in the clinical practice and basic science of pediatric nephrology.
Phone:       (317) 278-0854
E-mail:       aspn@northwestern.edu
Website:     www.aspneph.com

California Dialysis Council
This is an organization devoted to representing the state’s dialysis patients and clinics regarding legislative, regulatory, and other issues.
Phone:       (928) 717-1156
E-mail:       mail@californiadialysis.org
Website:    www.californiadialysis.org

CaringBridge
CaringBridge offers free, easy-to-create web sites that help connect friends and family when they need it most.
Phone:     651.452.7940
Website: www.caringbridge.org

Centers for Disease Control and Prevention (CDC)
The CDC serves as the national focus for developing and applying disease prevention and control, environmental health, and health promotion and education activities designed to improve the health of the people of the United States.
Toll-free:  (800) CDC-INFO
E-mail:     cdcinfo@cdc.gov
Website:  www.cdc.gov  

Centers for Medicare & Medicaid Services (CMS)
CMS is the federal agency that administers Medicare, Medicaid, and the State Children’s Health Insurance Program (SCHIP) in the US.
Phone:      (410) 786-3000
Toll-free:   (877) 267-2323
Website:    www.cms.gov 

Children’s Organ Transplant Association, Inc. (COTA)
COTA is designed for individuals and families who have children needing transplants and wish to obtain more information regarding financial assistance.
Toll-free:  (800) 366-2682
Website:   www.cota.org

Culinary Kidney Cooks (CKS)
CKC has published Cooking for David: A Culinary Dialysis Cookbook and Food Pyramid for Healthy Eating with Kidney Disease. The site is run by Sara Colman, RD, DCE, Renal dietitian, and nutrition educator, and Dorothy Gordon, BS, RN, whose husband was diagnosed with end-stage renal disease in 1997 and immediately began a renal diet.
Phone:      (714) 842-4684
Website:   www.culinarykidneycooks.com

DaVita
This large dialysis provider website provides excellent educational pages on dialysis, kidney disease, diabetes, diet and nutrition, recipes, and online seminars. There are also online tools for finding a dialysis center, a glomerular filtration rate (GFR) calculator, a discussion forum, and insurance advice.
Phone:        (310) 536-2400
Toll-free:   (800) 244-0680
Website:    www.davita.com

Dialysis at Sea Cruises
Since 1977, this largest provider of dialysis services aboard cruise ships has provided treatment and services to thousands of travelers. Each cruise has a nephrologist and one or more dialysis nurses. Patients can "beep" the shipboard dialysis staff 24 hours a day. Book early for best cabin selection and dialysis treatment time.
Phone:      (800) 544-7604
Website:   www.dialysisatsea.com

Dialysis Clinic Find and Compare - Dialysis Facility Tracker
This site is for dialysis patients and others who want to learn about the quality of care at individual dialysis clinics. Among other things, you can learn how often patient treated at a facility have been hospitalized, report certain types of infections or are placed on the tranplant list. The information is submitted by facilities and collected by contractors of the Centers for Medicaid and Medicare Services, the federal agency that oversees most dialysis care.
Website: http://projects.propublica.org/dialysis/

Dialysis Finder
Travel help for patients and social workers. The site can also help you locate a dialysis center close to you.
Phone: (866) 889-6019
Toll-free: (866) 889-6019
Website:  www.dialysisfinder.com

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.
Phone (toll-free): (866) 877-4242
E-mail:    dpc@dialysispatients.org
Website: www.dialysispatients.org

Disability Information
DisabilityInfo.gov is a comprehensive online resource designed to provide people with disabilities with the information they need to know quickly and easily. With just a few clicks, the site provides access to disability-related information and programs available across the government on numerous subjects, including:
· Civil rights;
· Education;
· Employment;
· Housing;
· Health;
· Income support and technology;
· Transportation; and
· Community life.
E-mail:       webmaster@disabilityinfo.gov
Website:     www.disability.gov 

Donate Your Kidneys
DonateYourKidneys.org is an organization that was established to raise awareness about the importance of organ donation and whose primary concern is reducing the waiting period for obtaining an organ to as close to zero as possible.
Toll-free: 1-800-388-2585
Phone: 718-529-6300
Website: www.donateyourkidneys.org/index.html 

ESRD National Coordinating Center (NCC)
The ESRD NCC is pleased to announce the national release of “Your Life, Your Choice: Stories from Kidney Transplant Patients and Donors”, a new resource  produced in collaboration with ESRD Networks 1, 2, 4, 6, 8, 15, and 17, who worked on the AIM 2 innovation project targeting increased transplant referral rates. This booklet contains the stories of real kidney transplant recipients and donors in their own words and can be found at http://esrdncc.org/your-life-your-choice-transplant-stories-booklet-released/
Phone:        (516) 209-5253
E-mail:         ncc@ncc.esrd.net
Website:     http://esrdncc.org/ 

Forum of ESRD Networks
The ESRD Networks provide a mechanism to ensure the most efficient use of Medicare dollars for dialysis treatment and kidney transplantation through monitoring quality of care indicators and maintaining data on the ESRD program. These functions are administered at the regional level through the 18 networks, providing direct and immediate access from the treatment provider to CMS.
Phone:        (804) 794-2586
E-mail:        forum@forum.esrd.net
Website:     www.esrdnetworks.org 

Global Dialysis
Global Dialysis is a resource for dialysis patients who want to travel nationally and internationally. Its aim is to collect and provide as much travel information as possible for dialysis patients, including details on nearly 12,000 dialysis facilities in 127 countries.
Website:  www.globaldialysis.com

Health Capsules
Health Capsules is an electronic monthly newsletter published by the National Institute of Health (NIH).  For the current issue, click on: newsinhealth.nih.gov/HealthTeachingA website for professionals to obtain educational materials to use in the field of nephrology. Created by a nephrology nurse, the teaching tools include laminated cards and posters to aid in training the client and staff in programs such as community-based hemodialysis (HD) and home HD.
Phone:        (250) 882-8422
E-mail:       info@HealthTeaching.com
Website:     www.healthteaching.com

Home Dialysis Central

Learn about all the options for home dialysis, including a listing of every center in the US offering this modality of treatment, equipment and new technology, patient profiles, Medicare reimbursement, discussion boards, and how pending laws may affect dialyzing at home.
Phone:        (608) 833-8033
E-mail:       info@homedialysis.org
Website:     www.homedialysis.org

HelpHopeLive (formerly NTAF)
The NTAF is designed for all organ and tissue transplant patients, their families, catastrophic injury patients, and professionals. This website provides information on financial assistance and transplant-related educational materials. It also contains links to individual transplant patient websites.
Toll-free:   (800) 642-8399
Website:   www.helphopelive.org 

Hypertension, Dialysis, and Clinical Nephrology
(HDCN)HDCN is aimed primarily at physicians and nurses who treat patients with renal disease. It provides selected information on renal disorders and their treatment, hypertension, dialysis, and clinical nephrology topics.
Phone:        (630) 325-3276
E-mail:       editor@hdcn.com  
Website:     www.hdcn.com
 
IgA Nephropathy Support Group
A comprehensive and informative website about IgA nephropathy from the perspective of what IgAN patients can expect to encounter throughout the course of their disease, from initial diagnosis to End-Stage Renal Disease (ESRD), and beyond. The focus is on IgAN as conventional treatment.  This is the companion information website to a very large and active IgAN discussion forum.
E-mail:     info@igan.ca 
Website:  www.igan.ca
 
IHateDialysis.com (IHD)
IHateDialysis is a site for patients, by patients. Do not let the site's name fool you. We are not negative, we hate dialysis - but we love life. IHD is the largest and most active dialysis message board on the Internet. We are a community that is very supportive of each other and we help both new and veteran patients cope with the daily struggles of living with kidney disease. If you are affected by kidney disease, then please join us, whether you are pre-dialysis, or on hemo, pd, home-hemo, or a transplant patient. If you are a spouse, relative, friend, or a loved one, then you are invited to join IHD too, as are those who work in the medical community.
E-mail:      admin@ihatedialysis.com
Website:    www.ihatedialysis.com

International Society for Peritoneal Dialysis (ISPD)
The Canadian-based ISPD was formed to promote the clinical application and scientific investigation of PD for treating renal failure. Society membership is open to medical, scientific, nursing, nutrition, social work, and business professionals. The society achieves its goals through triennial Congresses and its bi-monthly publication, Peritoneal Dialysis International.
Phone:        (905) 875-2456
Website:    www.ispd.org

International Society of Nephrology (ISN)

This is the official site of the ISN. It contains information on the ISN’s programs, congresses, officers and commissions, as well as information on their journal, Kidney International, and its contents.
Website:  www.isn-online.org   

International Transplant Nurses Society (ITNS)
This is the official site of the ITNS. It was created based on a need for specifically designed training and education for nurses in the field of Transplantation.
Phone:        (412) 343-4867
E-mail:       itns@msn.com
Website:     www.itns.org  
 
International Transplant Skin Cancer Collaborative (ITSCC)
The ITSCC was founded by a worldwide group of dermatologists dedicated to the care of skin of transplant recipients. The patient education portion contains important and helpful information for transplant patients. Overall, a very well designed and informative site.
Phone:        (414) 918-3191
E-mail:       info@itscc.org
Website:     www.itscc.org
 
JAMES REDFORD Institute for TRANSPLANT AWARENESS (JRI)
The JRI is a nonprofit organization dedicated to educating the public about the need for organ and tissue donation through film, educational outreach, and the web.
Phone:        (310) 559-6325
E-mail:       web@remove-this.jrifilms.org
Website:     www.jrifilms.org

KDOQI Clinical Practice Guidelines

The Kidney Disease Outcomes Quality Initiative (KDOQI) is the National Kidney Foundation’s (NKF) dialysis-specific section of its website, containing clinical practice guidelines and detailed information about dialysis methods. (See NKF entry below.)
Phone:        (212) 889-2210Toll-free:   (800) 622-9010
E-mail:        info@kidney.org
Website:     www.kidney.org

KIDNEEDS
This site describes a fund dedicated to finding a cure for membranoproliferative glomerulonephritis type 2. Currently, KIDNEEDS is supporting the research efforts of four scientists worldwide.
E-mail:       kidneedsMPGN@yahoo.com
Website:    www.medicine.uiowa.edu/kidneeds

Kidney Advocacy
The Kidney Advocate is an informative site focusing on helping families affected by kidney disease. This site contains information to help plan your child’s future and links to other valuable websites.
E-mail:       yettapearl@comcast.net 
Website:     www.kidneyadvocacy.50megs.com/Kidney

End-of-Life Coalition
The Kidney End-of-Life Coalition promotes effective interchange between patients, families, caregivers, payers, and providers in support of integrated patient-centered end-of-life care for chronic kidney disease (CKD) patients.E-mail:kidneyeol@nw5.esrd.netWebsite:www.kidneyeol.orgKidney & Urology Foundation of America (KUFA)KUFA is dedicated to helping the more than 70 million Americans who suffer from the debilitating effects of kidney, urologic, and related diseases, and to promoting ground-breaking research that will result in new and better treatments. This website is filled with information to assist the patient and resources such as emergency grants, scholarships and awards information.
Phone:        (212) 629-9770Toll-free:   (800) 633-6628
E-mail:       info@kidneyurology.org
Website:     www.kidneyurology.org

Kidney Directions
A patient-focused website sponsored by Baxter Healthcare that stresses each patient’s individual circumstances and needs. It has very good sections on the basics of kidney disease and the treatment options available to patients.
Phone:        (877) 543-6394, option 1
Website:     www.kidneydirections.com

Kidney Kids
Kidney Kids, inc. is a non-profit 501(c)(3) organization devoted to supporting children with kidney diseases and illnesses as well as their families. We are striving to lessen the physical, emotional and financial impacts of living with a kidney disease or illness.
Phone:       (703) 620-0939
E-mail:       info@kidneykids.org
Website:    www.kidneykids.org

Kidney Options
An educational website supported by Fresenius Medical Care North America for those with kidney disease and their healthcare professionals.  It provides information aimed at empowering patients with the knowledge they need to make informed decisions about their healthcare. It offers a free Kidney Options package with information patients need to know about kidney disease.
Toll-free:  (866) 543-6391
E-mail:      kidneyoptions@fmc-na.com
Website:   www.kidneyoptions.com

Kidney Patient Guide
The Kidney Patient Guide is a renal website published in the United Kingdom. It includes information on the physical aspects of kidney failure, including how the kidneys function, what happens when they don’t, the treatments available, and the emotional, social, and financial implications of kidney failure. There are also excellent animations for kidney transplants, hemodialysis, and peritoneal dialysis (PD).
E-mail:       kpg@pobox.com 
Website:     www.kidneypatientguide.org.uk

Kidney School

Kidney School is an online educational feature containing a series of 20-minute interactive modules that encourage patients to take control of their own healthcare and set goals in a Personal Action Plan. It was created by the Life Options Rehabilitation Program (see entry below) as a tool to inspire, motivate, and empower kidney patients while educating them on their condition and treatments.
Toll-free:  (800) 468-7777
Website:   www.kidneyschool.org

Kidney Transplant/Dialysis Association, Inc. (KT/DA)
KT/DA is an organization of dialysis and kidney transplant patients, their families and friends, and health professionals. The KT/DA officers are kidney patients. The association is dedicated to providing financial aid, information, and emotional support to chronic renal disease patients and their families.
Phone:  (781) 641-4000
E-mail:  KTDA1@rcn.co
Website:  www.ktda.org

Life Options Rehabilitation Program

Life Options is sponsored by Amgen. The site focuses on helping people on dialysis live well. Life Options specializes in renal rehabilitation. It has done an excellent job developing resources and programs based on the “5 E’s” of renal rehabilitation:· Encouragement;· Education;· Exercise;· Employment; and· Evaluation.
Website:     www.lifeoptions.org

Medical Education Institute, Inc.
Dedicated to helping people with kidney and other chronic diseases learn to manage and improve their health.
Phone: (608) 833-8033Fax: (608) 833-8366
Websites:   www.meiresearch.org


My Life, My Dialysis Choice (a program by MEI)
An online dialysis options tool based on people's lifestyle and health values.
Website: www.mydialysischoice.org

Medicare Quality Care Finder
Patients and their caregivers can find health care providers. facilities, health and drug plans, and equipment suppliers, and make "apples-toapples" comparisons of their quality. This site includes: Hospital Compare, Nursing Home Compare, Home Health Compare, Medicare Plan Finder, Dialysis Facility Compare and Physician Compare.
Toll-free:  (800) MEDICARE
TTY users: (877) 486-2048
Website: www.medicare.gov/quality-care-finder/

Medicare Prescription Drug Coverage
Offers basic information about prescription drug coverage, what it is, how you can get it, and why you should get it. Everyone with Medicare can qualify for coverage, which took effect on January 1, 2006.
Toll-free:  (800) 633-4227
Website:   www.medicare.gov

MedlinePlus®
MedlinePlus has good health information from the world’s largest medical library, the National Library of Medicine (see entry below). Health professionals and consumers alike can depend on it for information that is authoritative and up-to-date. There are lists of hospitals, physicians, a medical encyclopedia and a dictionary, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials.
Website:  http://MEDLINEplus.gov

MyMedSchedule.com®
This website is a tool to create free, easy-to-read medication schedules. You can: print schedules that are easy to create, read and update, receive reminders to take your medications by text or email, set refill reminders—reorder your prescriptions before they run out, keep track of your daily medications—strengths, dosage and purpose, bring your pill schedule to all your doctor appointments, maintain medicine schedules for yourself and family members, print your schedule in English or Spanish, convenient wallet-size schedules to carry with you and more.
Website:  www.mymedschedule.com/

National Association for Nephrology Technicians/Technologists (NANT)
NANT is a nonprofit organization established to improve the quality of care in the dialysis industry and promote education, recognition through certification and licensing, job security, and employment opportunities for nephrology technicians.
Phone:        (937) 586-3705
Toll-free:   (877) 607-6268
E-mail:       nant@nant.meinet.com
Website:     www.dialysistech.org

National Anemia Action Council (NAAC)
The National Anemia Action Council Inc. (NAAC) is a non-profit organization dedicated to raising the awareness of health care professionals and the public regarding the prevalence and under-treatment of anemia. NAAC is comprised of 19 leading health care providers who are experts in the detection of anemia, its evaluation and treatment. Member specialties include cardiology, critical care, gastroenterology, geriatrics, hematology, internal medicine, nephrology, nursing, oncology, rheumatology, and surgery. For more information including patient education sheets, a survey to take and bring to your doctor, research updates and more, please visit www.anemia.org
Phone: (414) 225-0138
E-mail: info@remove-this.anemia.org
Website: www.anemia.org

National Business & Disability Council (NBDC)
For more than 30 years, NBDC has been providing those with disabilities the information and resources they need to find jobs. The free services to job seekers include a national resume database, job search, career events, and internships.
Phone:      (516) 465-1516
Website:    www.business-disability.com/job_seekers.asp

National Foundation for Transplants (NFT)
This organization’s mission is to provide financial support and assistance for transplant patients and their families. They also provide information about organ donor awareness.
Phone:      (901) 684-1697
Toll-free:   (800) 489-3863
E-mail:       info@transplants.org
Website:     www.transplants.org/

National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK)
This National Institutes of Health (NIH) website (see entry below) contains a wealth of information ranging from health-related issues, clinical trial studies, health education program information, and research funding opportunities and resources.
E-mail:       dkwebmaster@extra.niddk.nih.gov
Website:    www.niddk.nih.gov

National Institutes of Health (NIH)
A part of the US Department of Health and Human Services, NIH is the primary federal agency conducting and supporting medical research with the aim of improving health and saving lives. Its scientists investigate ways to prevent disease as well as the causes, treatments, and cures for common and rare diseases.
Phone:         (301) 496-4000
Toll-free:    (800) 891-5390 (for Kidney and Urologic Diseases)
E-mail:        NIHinfo@od.nih.gov
Website:     www.nih.gov

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)
The NKUDIC is an information dissemination service of the NIH’s NIDDK (see entry above). It was established to increase knowledge and understanding about kidney and urologic diseases among patients, their families, healthcare professionals, and the general public.
Phone:        (301) 654-4415
Toll-free:   (800) 891-5390
E-mail:       nkudic@info.niddk.nih.gov
Website:     http://kidney.niddk.nih.gov

National Kidney Disease Education Program (NKDEP)
An NIH initiative, the NKDEP is designed to reduce the morbidity and mortality caused by kidney disease and its complications. It focuses on those at highest risk, particularly African Americans with diabetes, hypertension, or a family history of kidney failure.
Toll-free:  (866) 454-3639
E-mail:      nkdep@info.niddk  
Website:   www.nkdep.nih.gov/

National Kidney Foundation (NKF)
The NKF is a voluntary health organization that seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
Phone:        (651) 636-7300
Toll-free:   (800) 622-9010
E-mail:       info@kidney.org
Website:     www.kidney.org

National Kidney Registry
Facilitating Living Donor Transplants
Phone:      (631) 517-9546
Toll-free:   (800) 936-1627
E-mail:      administration@kidneyregistry.org
Website:   www.kidneyregistry.org

National Library of Medicine (NLM)
The NLM website provides access to the Medline/PubMed database. It has references and abstracts from several thousand medical journals, www.ClinicalTrials.gov  (information for patients about clinical research studies), and Dirline, a directory of healthcare organizations.
Phone:      (301) 594-5983
Toll-free:   (888) 346-3656
E-mail:       custserv@nlm.nih.gov
Website:    www.nlm.nih.gov

National Living Donor Assistance Center
Providing financial assistance to those who want to donate an organ, priority is given to individuals not otherwise able to afford the travel and subsistence expenses associated with living organ donation.
Phone:      (703) 414-1600
Fax:         (703) 414-7874
E-mail:       NLDAC@livingdonorassistance.org
Website:  www.livingdonorassistance.org

National Minority Organ and Tissue Transplant Education Program (MOTTEP)
MOTTEP is the first program of its kind in the US to:
· Educate minorities about organ and tissue transplantation;
· Empower these communities to develop transplant education programs allowing them to be involved in addressing the donor shortage;
· Increase the participation of minorities in organ/tissue transplant endeavors, including the signing of organ donor cards; and
· Increase the number of minorities who donate organs and tissues.
Phone:        (202) 865-4888
Toll-free:   (800) 393-2839
E-mail:       ccallender@nationalmottep.org
Website:     www.mottep.org

National Renal Administrators Association (NRAA)
NRAA is the only national association representing dialysis managers and administrators. Members are involved in the care of the majority of patients in dialysis clinics in the US.
Phone:       (215) 320-4655
E-mail:       nraa@nraa.org
Website:    www.nraa.org

NeedyMeds, Inc.
A list of programs to assist those who can’t afford to purchase the medications they need. Explains how to get help from patient assistance programs that are provided by many different pharmaceutical manufacturers.
Phone:        (215) 625-9609
Website:     www.needymeds.com/

The NephCure Foundation
The NephCure Foundation is the only organization solely committed to seeking a cause and cure for two potentially devastating kidney conditions, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals joining forces to create awareness and generate funding for research.
Contact person: Miriam Long
Phone:       (866) NephCure
E-mail:        info@nephcure.org
Website:     www.NephCure.org

NephKids Kidney Disease Support Group
A group of concerned families, patients and medical caregivers sharing information and experiences with the purpose of helping children and adolescents with kidney disease.
Email: eshirley_5@remove-this.yahoo.com
Website: http://cnserver0.nkf.med.ualberta.ca/nephkids/

Nephrogenic Diabetes Insipidus Foundation (NDIF)
The NDIF is a community website for patients and their families, researchers, physicians, and other healthcare providers. Contains information about NDI, which includes:
· Nutrition guidelines;
· Facts and statistics;
· Research directories; and
· Journal articles
Phone:        (888) 376-6343
E-mail:       info@ndif.org
Website:     www.ndif.org

Nephrology Channel (NeC)
NeC is an educational and community-based website for patients, family members, and healthcare professionals to learn more about a variety of conditions related to kidney disease. The site features an MDLocator, which can help find a nephrologist near you and teach you how to carefully choose a physician. It has good interactive features such as the live chat and alternative treatment and nephrology forums.
Website:  www.nephrologychannel.com

Nephron Information Center (NIC)
Developed by Steve Fadem, MD, a nephrologist practicing in Texas, NIC is a comprehensive, well-organized, renal-specific site.
Phone:        (713) 795-5511
E-mail:       fadem@bcm.tmc.edu
Website:     www.nephron.com

Northwest Kidney Centers (NKC)
The NKC began operating in Seattle, WA, in 1962 as the first outpatient dialysis center in the world.  Such nephrology “super stars” as the late Belding Scribner, MD, the father of chronic dialysis, and Christopher R. Blagg, MD, helped pioneer the use of home hemodialysis (HHD) at the NKC.  HHD is still a specialty of the NKC.
Phone:        (206) 292-2771
E-mail:       webmaster@nwkidney.org
Website:     www.nwkidney.org

PDServe Global (PDSG)
PDSG is “the most comprehensive, worldwide educational resource for peritoneal dialysis.” The site is designed for healthcare professionals and contains educational materials based on universal practices. Overall, this site is a wonderful resource.
PDServe North America:
Toll-free:   (888) 557-3737
E-mail:       PDServeNA@fmc-na.com
PDServe Asia Pacific (Hong Kong):
Phone:        (852) 81044885
E-mail:       PDServe.HKC@fmc-asia.com  
Website:    www.pdserve.com/pdserve/pdserve.nsf

PKD Foundation
The Polycystic Kidney Disease (PKD) Foundation is a worldwide organization devoted to determining the cause, improving clinical treatment, and discovering a cure for PKD. This is the official site of the Polycystic Kidney Research Foundation.
Phone:        (816) 931-2600
Toll-free:   (800) PKD-CURE
Website:    www.pkdcure.org

RenalNet
RenalNet was created by Drs. Dugan and Frank Maddux, nephrologists in Danville, VA, to provide a clearinghouse for historical information on the cause, treatment, and management of kidney disease and ESRD.
Phone:        (434) 799-8407
E-mail:       renalnet@gamewood.net 
Website:     www.renalnet.org

Renal Physicians Association (RPA)
The RPA is a national medical specialty association for nephrologists and their practice managers. They work to optimize care for renal patients, promote and protect the professional status of the discipline of nephrology, and serve as a resource for the development of health policy affecting the renal community.
Phone:     (301) 468-3515
E-mail:      rpa@renalmd.org
Website:   www.renalmd.org

Renalinfo
A project of Baxter International, Renalinfo offers information, support and resources for those with kidney failure, including causes, symptoms, tests, ideas for maintaining health, and a comprehensive presentation of treatment choices.
Toll-free:  (877) 543-6394, option 1
Website:   www.renalinfo.com

RenalWeb
RenalWeb is an independent website developed and maintained by Gary Peterson, RN. It is intended to function as an “announcement board” for news, new products, services, and educational resources.
E-mail:       renalweb@renalweb.com
Website:    www.renalweb.com 

Social Security Online
Offers tips on planning your retirement and calculating your benefits. Apply for retirement benefits online. The Social Security Administration pays retirement, disability, and survivor benefits to workers and their families, administers the Supplemental Security Income program, and issues Social Security numbers.
Toll-free:  (800) 772-1213
Website:   www.ssa.gov

Starlight Starbright Children's Foundation
A website that provides chronically ill teens opportunities to learn more about CKD and other chronic illnesses, chat, and blog with other teens from all over the world.
Website: http://kidneydisease.starlightprograms.org/

Transplanthealth
Provides comprehensive information regarding transplantation, interactive tools, links, and other helpful resources for transplant candidates, recipients, their families, and caregivers. Good e-mail updates that keep you current with what’s going on in the transplant community.
Website:  www.transplanthealth.com

Transplant Living
This site has a wealth of information for transplant recipients, family members and healthcare professionals. Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization (see entry below) that maintains the national Organ Procurement and Transplantation Network (OPTN).
Toll-free:  (888) 894-6361
Website:   www.TransplantLiving.org

TransWeb
TransWeb: All About Transplantation and Donation is a nonprofit education site serving the world transplant community. It features news and events, patient experiences, the top 10 myths about donation, a donation quiz, questions and answers, and a reference area.
Phone:        (734) 998-7314
E-mail:       transweb@umich.edu
Website:     www.transweb.org

UKidney.com - Internet School of Nephrology
Provides many educational tools for the study and practice of nephrology, hypertension, and kidney transplantation. This site features essential contributions from members of the University of Toronto's Division of Nephrology. We hope that you will return to this site as an emerging internet school for nephrology education and kidney information.
Website:     www.ukidney.com

United Network for Organ Sharing (UNOS)
Brings together medicine, science, public policy and technology to facilitate every organ transplant performed in the United States. UNOS is a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN).
Phone:        (804) 782-4800
Toll-free:   (888) 894-6361
E-mail:       webmaster@unos.org
Website:     www.unos.org

University Kidney Resource Organization (UKRO)
UKRO is a charitable organization funding research into the prevention, treatment and eradication of kidney disease. UKRO was founded by entertainment lawyer Kenneth Kleinberg, who in 1999 was diagnosed with a kidney ailment that to this day has no known cause. Mr. Kleinberg suffered renal failure in 2001, and was a dialysis patient for the next six years until receiving a successful kidney transplant in 2007. In 2002 with a small group of committed individuals and with the help of Dr. Vito M. Campese, Professor and Chief of the Division of Nephrology and Hypertension at USC Keck School of Medicine, UKRO was established as a non-profit organization to provide support for kidney disease research.
Phone:      (310) 286-6479
E-mail:      info@ukrocharity.org
Website:   ukrocharity.org

US Renal Data System (USRDS)
This is a national data system, which collects, analyzes, and distributes information about EDRD disease in the US. Visit this very informative website to find more information on the incidence and prevalence of ESRD, preventative health care measures, and treatment modalities.
Phone:        (612) 347-7776
Toll-free:   (888) 99-USRDS
E-mail:       usrds@usrds.org
Website:     www.usrds.org

ustransplant.org
Use an interactive tool to calculate and compare waiting times by transplant hospital, blood type, and donor characteristic.
Website:     www.ustransplant.org

USDA Nutrient Data Laboratory (NDL)
The NDL provides information on the nutrient content of foods. The searchable database is useful in determining calorie, protein, phosphorus, potassium, and sodium information on over 6,200 different foods.
Phone:        (301) 504-0630
E-mail:       holdenj@ba.ars.usda.gov
Website:     www.ars.usda.gov/nutrientdata

World Kidney Fund
The World Kidney Fund was established as an international fund by the National Kidney Foundation Singapore to help kidney patients in developing countires who have little or no access to renal healthcare facilities. Through this fund, training programmes are developed to empower non-profit kidney organisations to establish sustainable life-saving kidney healthcare programmes. The World Kidney Fund also aims ro raise global awareness about kidney diesease and transplantation issues, as well as educate the international public on kidney diease preventive methods.
Email:       wkf@nkfs.org
Website:   http://www.worldkidneyfund.org/