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dialysis, write to your legislator, read patient
stories, post to moderated message boards, see home dialysis machines, and
more.WebTV's Kidney Failure Site Provides kidney failure patients, and their family and friends, with personalized timely information on ESRD. It also provides its members with a forum to interact online with other ESRD patients as well as health professionals. The service is free, but does require a short registration process.
ESRD Networks The Forum of ESRD Networks
is a nonprofit organization that advocates on behalf of its membership and coordinates
projects and activities of mutual interests to ESRD Networks. All 18 ESRD Networks
are members of the Forum which facilitates the flow of information and advances
a national quality agenda with CMS (the Centers for Medicare and Medicaid Services)
and other renal organizations. The mission of the Forum is to support the ESRD
Networks in promoting and improving the quality of care to patients with renal
disease, thorough education and the collection, analysis, and dissemination
of data and information.
NephroWorld: The Virtual Community
and Marketplace for Professionals, Patients, Organizations and Companies related
to Nephrology. This is an international site with enough info and links to keep
you busy for hours.
Life Options Rehabilitation Program, funded
by an educational grant from Amgen Inc., began in 1993 with a white paper on
barriers to rehabilitation and potential solutions, which was released to the
renal community. Life Options has since grown to include a national awards program,
free resource materials for dialysis patients and professionals, a free bimonthly
newsletter, research and publishing activities, and a loan-library of speakers'
kits on renal rehabilitation
Their Web page includes extensive lists of WWW resources for kidney patients and professionals, including government and disability resources. They pledge to continually expand their Web page to help patients with kidney failure learn what we already know is possible: that many of them can work, exercise, pursue hobbies and volunteer tasks, and be the key decision-makers in their own treatment.
Quarter Century Club,
an organization of organ transplant recipients who have had their transplant
for over 25 years. "We
have over 40 members,
the youngest is 27 years out, and the oldest is 38 years out! Most of us are
planning to meet at the Transplant Olympics in July! Contact us for membership!
We are growing every day!"
Life Options Kidney School is a free, interactive, research-based kidney learning center in 16 30-minute modules. Each module has lively content; patient quotes; a pre/post-test; pop-ups, graphics, photos, or animations; an evaluation; and a certificate of completion--and each module uses visitor input to create a Personal Action Plan that can be printed. The purpose of Kidney School is to empower patients to be active participants in their own care.
The Kidney & Urology Foundation of America, Inc. is a national, not-for-profit organization dedicated to helping people avoid the debilitating effects of kidney and urologic diseases – disorders affecting as many as 70 millions Americans today. The Foundation is focused aggressively on kidney and urologic research, to nurture the development of new therapies and to make research and new therapies more accessible to people in need. Through its funding of research, medical conferences and interdisciplinary hospital initiatives, the Kidney & Urology Foundation will provide the leadership necessary to promote a better understanding of kidney and urologic diseases.
The National Kidney Foundation. The NKF is the
major voluntary health agency seeking the answer to the causes, prevention,
treatment, and cure of diseases of the kidney and urinary tract through research,
patient and family services, nationwide organ donor programs, professional
education,
and public information.
The American Transplant
Association, Inc. (ATA) is a national, non-profit organization dedicated
to providing patient-oriented education and services to those affected by and
interested in organ transplantation. ATA's mission focuses on bringing a patient's
perspective to the education, services and support that transplant patients
and their families need.
New England Organ Bank (NEOB)
The oldest independent organ bank in the United States. NEOB is the federally-designated
organ procurement organization (OPO) for the six New England states
United Network for Organ Sharing (UNOS) UNOS administers
the national Organ Procurement and Transplantation Network (OPTN) and U.S. Scientific
Registry on Organ Transplantation under contracts with the U.S. Department of
Health and Human Services. UNOS members include every transplant program, organ
procurement organization and tissue typing laboratory in the United States.
The World Kidney Fund
is an international fund established by the National Kidney Foundation of Singapore
in response to the plight of kidney failure victims in developing countries,
who have limited or no access to healthcare facilities. In line with our mission,
we offer and support programs that empower renal communities in these countries
to establish and improve their own sustainable non-profit renal healthcare programs.
The Nephron Information Center A wealth of
information about kidney disease, transplantation, and public and private resources.
Many of the links are organized by region of the country and state.
Renalnet.
A kidney disease information clearing house. RENALNET was created by Drs. Dugan
and Frank Maddux, nephrologists in Danville, Virginia, to provide
a clearinghouse for information on the cause, treatment and management of kidney
disease and End Stage Renal Disease(ESRD). RENALNET utilizes the vast resources
of Internet to open avenues of communication among individuals and organizations
involved in the care of patients with kidney disease.
txlongterm is an e-mail list created by Robin Peters for longterm transplant patients interested in exchanging information and experiences through e-mail. Anyone can subscribe.
The UCLA
Kidney Transplant Program was among the pioneers in transplantation, performing
some of the earliest kidney transplants in the United States. UCLA's program
performs living-related and cadaveric renal transplants in over 200 adult and
pediatric patients a year. The UCLA Kidney Transplant Program has earned a national
reputation for its clinical and academic excellence, and is recognized as a
national leader in clinical research. Their site contains downloadable literature,
frequently asked questions, and links to other sites
The Organ Donation Awareness Council ofthe Wabash Valley is a non profit, non fund-raising organization, formed for the sole purpose of providing eduction to the general public concerning organ donation. Their site contains much information about organ and tissue donation, along with links to other organizations concerned with transplantation.
Alport Syndrome Home Page
Alport syndrome, affecting about one in 5,000 persons, is hereditary glomerulonephritis
that is caused by mutation of one or the other of several COL4A genes that specify
protein chains of basement membrane (Type IV) collagen, or by mutation of unknown
genes. Especially in males, the resultant chronic nephritis progresses via uremic
syndrome to end-stage renal disease (ESRD) that may be treated by dialysis or
by kidney transplantation. In various families, the kidney disease may be associated
with various combinations of: hearing loss; lenticonus and other eye disorders;
immunological abnormality of skin; disorders of platelets; abnormalities of
white blood cells; or smooth muscle tumors.
The Hereditary Nephritis Foundation (HNF) Home Page The HNF supports education and research on hereditary kidney diseases, primarily Alport syndrome, and offers the periodical HNF Newsletter. While a small organization, the HNF has since 1978 provided essential seed money for laboratory and clinical research projects at University of Utah and other institutions.
The Vancouver Hospital Renal Program contains information about their renal care programs, links to many other sites of interest, and a description of their provincial clinical database for the treatment of solid organ failure.
txlongterm is an e-mail list created by Robin Peters for longterm transplant patients interested in exchanging information and experiences through e-mail. Anyone can subscribe.
Founded in 1968, the Australian
Kidney Foundation's mission is to be recognised as the leading Australian
non-profit national organisation providing funding for, and taking the initiative
in, the prevention of kidney and urinary tract diseases. The Foundation funds
medical research and training and conducts various educational programs for
patients, health professionals, and government.
Martin Pollack's Laboratory Website The laboratory of Dr. Martin Pollak at the Harvard Medical School and Brigham and Women's Hospital is studying inherited forms of focal segmental glomerulosclerosis (FSGS). FSGS is a form of kidney disease that may lead to proteinuria, nephrotic syndrome, renal insufficiency, and end-stage renal disease (ESRD). The goal of this research is to use the tools of modern molecular genetics to identify genes which cause or predispose to the development of FSGS. We have localized one FSGS gene and are seeking to identify this gene. This work should ultimately lead to a better understanding of the cause of FSGS and related disorders and possibly lead to improved diagnosis and treatments. Additional families with FSGS are sought to include in this study. Interested patients, families, and physicians are asked to please contact Dr. Martin Pollak or Lori Ann Correia, Genetics Coordinator at (617) 525-5840.
The Paddlers for Parts Association is a group of seakayakers and white water paddlers based in Yellowknife NT that promote Organ and Tissue Donation and support the aims of the Kidney Foundation of Canada. Each year the group undertakes a 1000 mile journey either by kayak, canoe, bicycle or foot in an effort to raise funds for the Kidney Foundation cof Canada. Our mission is two fold in that we promote Organ and Tissue Donation and are active as well promoting the paddle sports of kayaking and canoeing.
The mission of the National Kidney Foundation of the National Capital Area (NKF) is 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. The Washington metropolitan area has the highest prevalence of kidney disease in the country. Proceeds from NKF events help fund medical research, patient and community services, professional and public education, and organ donation programs.