National Kidney Patient Resources Renal Support Network
National Patient Resources
Do you know of a great renal resource that doesn't yet appear on our list?
Please email us at info@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
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: (480)460-0621
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
Cameron Siemers Life Grants
Are you between the ages of 18-28?
Have you been diagnosed with a chronic illness? Do you have a dream that you need some financial help realizing?
If you are then check out the Life Grants that are available through the
Carl Siemers Foundation for Hope. This non-profit organization created these grants to instill hope in young adults who
are not only going through the tough transition to adulthood, but have a
life-threatening illness at the same time. For further details go to their website.
Phone: (877) 774-7768
Website:
www.cameronsiemers.org/life-grants.html
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 Kidney Disease Support Group (CKDS) Works to improve the lives of children suffering from kidney disease by
providing both emotional and financial support, as well as educating parents and
families of children diagnosed with kidney disease. It also hosts support group
meetings for parents.
Phone: (661) 296-6452
E-mail: kidneykids@childrenskidneydisease.org
Website: www.childrenskidneydisease.org
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 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 patients treated at a facility have been hospitalized, report certain types of
infections or are placed on the transplant 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/
Medicare Quality Care Finder
Patients and their caregivers can find health care providers, facilities, health and drug plans, and equipment suppliers,
and make “apples-to-apples” comparisons of their quality. This site inlcudes: 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/
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.disabilityinfo.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
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:
http://newsinhealth.nih.gov/
HealthTeaching
A 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
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@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) 889-2210
Toll-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.net
Website:www.kidneyeol.org
Kidney & 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) 629-9770
Toll-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.
Phone: (608) 833-8033
Website: www.lifeoptions.org
Medical Education Institute, Inc.
Madison, WI
Dedicated to helping people with kidney and other
chronic diseases learn to manage and improve their health.
Phone: (608) 833-8033
Fax: (608) 833-8366
Websites:www.meiresearch.org
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@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: (212) 889-2210
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
National Transplant Assistance Fund (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.
Phone: (610) 535-6105
Toll-free: (800) 642-8399
Website: www.transplantfund.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@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: www.worldkidneyfund.org
