Directory of Kidney and Urologic Diseases Organizations

Alport Syndrome Study

410 Chipeta Way
Room 156
University of Utah Health Sciences Center
Salt Lake City, Utah 84108-1297
(801) 581-5479

Mission: To support research in the genetic
basis of various forms of hereditary nephritis (Alport Syndrome) and the ongoing collection of clinical family histories and laboratory samples, which are maintained in a confidential genetic database.

955 D North Plum Grove Road
Schaumburg, Illinois 60173
(708) 517-1050
FAX (708) 517-7229

Mission: To stimulate interest in the science and practice of urology and to promote understanding of socioeconomic and political affairs affecting medical practice among clinical urologists who are members of the American Urological Association and the American Medical Association.

Publications: AACU News (bimonthly) and AACU FAX (monthly legislative update FACSIMILE).

University of Virginia Hospital
Box 422
Charlottesville, Virginia 22908
(804) 924-2224

Mission: Professional society of urologists elected into membership due to their outstanding contributions to urology.

100 South Ashley Drive
Suite 280
Tampa, Florida 33602
(800) 749-2257 or (813) 223-7099
FAX (813) 223-0001

Mission: To serve the needs and interests of kidney patients and their families. Founded by kidney patients to help others with kidney failure cope with its physical and emotional impact on their lives.

Publications: Renalife (semi-annual journal) and The AAKP Bulletin (quarterly newsletter).

Local Groups: 21

31700 Telegraph Road
Suite 150
Bingham Farms, Michigan 48025
(313) 646-9720

Mission: To identify for the public's knowledge those physicians who have satisfied the Board's criteria for certification and recertification in the speciality of urology.

300 West Pratt Street
Suite 401
Baltimore, Maryland 21201
(800) 242-2383 or (410) 727-2908

Mission: To provide research grants, patient and public education, government relations, and patient support group activities.

Publications: Informational brochure about AFUD, Foundation Focus (quarterly newsletter), and patient education brochures.

Councils: Prostate Health Council, Bladder Health Council, Pediatric Council.

6110 Executive Boulevard
Suite 1010
Rockville, Maryland 20852
(800) 638-8299 or (301) 881-3052

Mission: To provide direct financial assistance, comprehensive educational programs, research grants, and community service projects for the benefit of kidney patients.

Publications: AKF Nephrology Letter, AKF Torchbearer, AKF Newsletter for Health Professionals, and patient and public education brochures.

13 Elm Street
Manchester, Massachusetts 01944
(508) 526-8330

Mission: Professional membership society dedicated to addressing all aspects of lithotripsy as a medical treatment for both renal stones and biliary disease.

Publication: ALS Quarterly News.

East Holly Avenue
Box 56
Pitman, New Jersey 08071-0056
(609) 256-2320
FAX (609) 589-7463

Mission: To protect the future of quality renal care through continuing education, research, standards of clinical practice, quality assurance activities, certification, and interdisciplinary communication and cooperation.

Publications: ANNA Journal, ANNA Update (bi-monthly newsletter), Core Curriculum for Nephrology Nursing, position statements, and clinical monographs.

Local Groups: 4 regions, 100 chapters.

P.O. Box 4206
Silver Spring, Maryland 20914
(301) 384-9405

Mission: To offer patient support, education, and research information about prostate disorders, including non-cancerous prostate enlargement, prostatitis, and prostate cancer.

1340 Charwood Road
Hanover, Maryland 21076
(410) 859-3735

Mission: To increase awareness about prostate diseases and establish centers for diagnosis and treatment.

Publications: What You Don't Know About Your Prostate Can Kill You (brochure), Medication Versus Surgery (brochure), and quarterly newsletter.

National Office
P.O. Box C
Boca Raton, Florida 33429-0468
(407) 391-8589

Mission: To promote the increase of knowledge about artificial internal organs and their utilization.

Publications: ASAIO Journal (quarterly peer-reviewed journal), ASAIO Abstracts (for annual meeting).

P.O. Box 15804
Lenexa, Kansas 66285-5804
(913) 541-0009

Mission: To provide investigators in the field with a mechanism for education and communication and to influence regulatory efforts, provide a forum for the exchange of research and clinical data, and offer technical workshops at an annual education meeting.

Publications: Topics in Clinical Histocompatibility Testing, Volumes 1-3; Cellular Immunology, 1983; Paternity Testing, Data Analysis and Management in the Immunogenetics Lab; Third American Histocompatibility Workshop Report of HLA-A,B,C; Serology (Phases I and II) and B-Cell Serology (Phase II); Clinical Histocompatibility Testing; Laboratory Procedures Manual; Human Immunology Journal; membership directory.

American Society of Nephrology

1101 Connecticut Avenue, NW
Suite 700
Washington, DC 20036
(202) 857-1190

Mission: To contribute to the education of member nephrologists and to improve the quality of patient care.

Publications: Journal of the American Society of Nephrology (JASN), Training Program Directory, and Highlights (member newsletter).

Department of Pediatrics
Children's Hospital of Buffalo
219 Bryant Street
Buffalo, New York 14222
(716) 878-7300

Mission: To promote public and professional educational programs in pediatric nephrology.

c/o Wright Organization, Inc.
716 Lee Street
Des Plaines, Illinois 60016
(708) 824-5700
FAX (708) 824-0394

Mission: To promote and encourage education and research with respect to transplantation surgery through applying funds, gifts, bequests, and endowments. Offers accreditation of training programs for transplant surgeons.

401 N. Michigan Avenue
Chicago, Illinois 60611-4267
(312) 644-6610
FAX (312) 527-6640
Deene Alongi, Executive Director

Mission: To promote research and education in uro-gynecology and to improve care for women with lower urinary tract disorders.

Publication: Quarterly newsletter.

1120 North Charles Street
Baltimore, Maryland 21201
(410) 727-1100

Mission: To encourage research, experiments, investigations, and analysis of conditions of the genitourinary tract and their treatments and corrections; to develop scientific methods for the diagnosis, prevention, and treatment of disorders of the genitourinary tract; to benefit the general public by encouraging the study of and maintaining the highest possible standards for urological education, practice, and research; and to promote the publication of and encourage contributions to medical and scientific literature pertaining to urology.

Publication: American Journal of Urology.

11512 Allecingie Parkway
Richmond, Virginia 23235
(804) 379-5513

Mission: To unite urologic allied health professionals and promote the highest quality of urologic education and professional standards for the better and safer care of the urologic patient/client.

Publications: Program Newsletter, Urologic Nursing (official journal of AUAA), and Standards of Urologic Nursing Practice.

Local Groups: 32

407 Strawberry Hill Avenue
Stanford, Connecticut 06902
(914) 285-1470 (daytime) or
(203) 348-0601 (evening)

Mission: To disseminate information about bladder control problems to all interested parties, to establish a network of continence support groups throughout the United States, to provide a resource for the public and professionals, and to work with manufacturers who produce incontinence products.

c/o Department of Urology
Long Island Jewish Medical Center
270-05 76th Avenue
New Hyde Park, New York 11042
(718) 470-7221

Mission: To educate urologists about research and treatment in the management of endourological problems.

Publication: Journal of Endourology.

P.O. Box 1593
Augusta, Georgia 30903
(800) 433-4215

Mission: To improve the quality of life for those suffering from sensitive medical disorders. Through the nonprofit organization's seminars and educational materials, patients and their partners learn about the treatment of impotence so they can make an informed choice.

Publications: Educational booklets and slide/video programs for consumers and medical professionals.

Membership Address:
P.O. Box 544
Union, South Carolina 29349
Business Address:
P.O. Box 8306
Spartanburg, South Carolina 29305
(800) BLADDER or (803) 579-7900
FAX (803) 579-7902

Mission: To improve the quality of life for people with incontinence. HIP is a leading source of education, advocacy, and support to the public and to the health profession about the causes, prevention, diagnosis, treatment, and management alternatives for incontinence.

Publications: The HIP Report.

P.O. Box 57294
Murray, Utah 84107
(801) 581-7790

Mission: To promote research into the causes of and cures for hereditary nephritis and to provide up-to-date general information about Alport Syndrome and related conditions to patients, families, and physicians.

Publication: HNF Newsletter (semi-annual).

234 Summit Avenue
Jenkintown, PA 19046
(215) 884-9038

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.

Publications: Newsletter and pamphlets.

8201 Corporate Drive
Suite 320
Landover, MD 20785
(800) 669-1603 or (301) 577-0650

Mission: To inform and educate the public about impotence and its causes and treatments, and to maintain a referral list of urologists who will treat and diagnose impotence.

Publications: It's Not All In Your Head (book), Impotence Worldwide (newsletter), Impotence: Help and Hope (videotape).

Mission: To promote public and professional education and symposia.

Publication: Pediatric Nephrology.

Department of Nephrology
University of Florida
P.O. Box 100224
Gainesville, Florida 32610-0231
(904) 392-4008

Mission: To educate nephrologists about research and patient care.

Publication: Kidney International.

c/o James F. Winchester, M.D.
Georgetown University School of Medicine
F-6003-PHC
3800 Reservoir Road, NW
Washington, DC 20007
(202) 784-3662

Mission: To advance knowledge of peritoneal dialysis.

Publication: Peritoneal Dialysis International.

Foster Plaza 5, Suite 300
651 Holiday Drive
Pittsburgh, Pennsylvania 15220
(513) 223-9765

Mission: Professional membership organization of transplant nurses dedicated to improving patient care through dissemination of information and symposia.

Publication: ITNS Newsletter.

2020 Zonal Avenue
IDR - 220
Los Angeles, California 90033
(213) 226-7591

Mission: To develop testimony about kidney and urologic diseases for Congress.

P.O. Box 1553
Madison Square Station
New York, New York 10159
(800) ICA-1626 or (212) 979-6057
FAX (212) 979-6058

Mission: To assist patients with interstitial cystitis (IC), to educate the medical community about IC, to promote IC research.

Publications: ICA (brochure), ICA Update (quarterly newsletter), transcripts of annual meetings, and patient and professional education materials.

Local Groups: Yes

Technologists and Technicians
60 Revere Drive
Suite 500
Northbrook, Illinois 60062
(708) 480-7675

Mission: To emphasize and promote interaction between practitioners and industry, and to provide training and certification.

Publications: Bi-monthly newsletter, educational and technical manuals.

1234 Sherman Avenue,
Suite 200
Evanston, Illinois 60202
(708) 332-1051
FAX (708) 328-4425

Mission: To provide information to patients and physicians; to sponsor research on kidney cancer; to act as an advocate on behalf of patients with the Federal government, insurance companies, and employers.

Publications: We Have Kidney Cancer (56-page booklet for patients), Kidney Cancer News (quarterly newsletter), and public policy papers. Chapters: New York, Los Angeles, Chicago.

Annual Convention: In July for both patients and physicians.
Other Services: Free information on kidney cancer and clinical trial information by E-mail: 708-332-1052.

30 East 33rd Street
New York, New York 10016
(800) 622-9010 or (212) 889-2210

Mission: To seek the total answer to diseases of the kidney and urinary tract through prevention, treatment, and cure; and to conduct programs in research, professional education, patient and community services, public education, and organ donation.

Publications: The Kidney, American Journal of Kidney Diseases, CNSW Perspectives, CRN Quarterly, CNNT Action Update, Family Focus (newsletter), and patient and public education materials.

State Groups:50

Other Services: Council of Nephrology Nurses and Technicians (CNNT), Council of Nephrology Social Workers (CNSW), Council on Renal Nutrition (CRN), Council on Clinical Nephrology (CCN), Council on Dialysis and Transplantation (CDT), and Council on Urology.

804 Second Street Pike
Southhampton, Pennsylvania 18966
(215) 953-8883

Mission: To help kidney patients obtain quality treatments, to increase patient awareness and rights, to obliterate the current practice of reusing medical disposables, and to urge strict government enforcement of manufacturers' labels.

P.O. Box 8923
New Fairfield, Connecticut 06812-1783
(800) 999-6673 or (203) 746-6518

Purpose: To act as a clearinghouse for information about rare disorders and provide a network for mutual support to match families with similar disorders; to foster communication among rare disease voluntary agencies, government bodies, industry, scientific researchers, academic institutions, and concerned individuals; and to encourage and promote research and education about rare disorders and orphan drugs.

Publications: Fact sheets and reprints on rare disorders and Orphan Drug Update (newsletter).

c/o Wadi N. Suki, M.D.
6550 Fannin
Suite 1273
Houston, Texas 77030

Mission: To disseminate current information about dialysis and transplantation, to provide an update for the status of the management of renal transplantation and its complications, and to provide an update on the mechanisms involved in the progression of renal disease.

P.O. Box 15384
Lenexa, Kansas 66285-5384
(913) 492-3600

Mission: To enhance the role of the transplant coordinator, and to provide training courses for professionals.

Publications: In Touch/Journal of Transplant Coordinator and patient care brochures.

1027 South Yates Road
Memphis, Tennessee 38119
(800) 489-3863 or (901) 684-1697

Mission: To provide financial and support assistance to transplant patients and their families.

P.O. Box 1632
Kent, Washington 98035
(800) 484-9698 ext. 5100 or (206) 631-0386

Mission: To inform the public, especially patients, parents, families, physicians, and medical professionals about hyperoxaluria and the related conditions, i.e., oxalosis and calcium-oxalate kidney stones; to provide a support network for those affected by hyperoxaluria, and to support and encourage research to find a cure for hyperoxaluria.

922 Walnut Street, Suite 411
Kansas City, Missouri 64106
(800) PKD-CURE or (816) 421-1869
FAX (816) 421-7208

Mission: To promote research in the cause and cure of polycystic kidney disease.

Publications: Polycystic Kidney Disease (patient manual); PKR Progress (quarterly newsletter); Fifth International Workshop Book; Autosomal Recessive PKD, Questions and Answers.

c/o New York Medical College
Psychiatric Institute
Valhalla, New York 10595
(914) 285-8424

Mission: To conduct conferences devoted to psychological issues surrounding patients with kidney failure.

Publications: Psychonephrology I: Psychological Factors in Hemodialysis and Transplantation, and Psychonephrology II: Psychological Problems in Kidney Failure and Their Treatment.

2011 Pennsylvania Avenue, NW, Suite 800
Washington, DC 20006-1808
(202) 835-0436
(202) 835-0436

Mission: To ensure optimal care under the highest standards of medical practice for patients with renal disease and related disorders, to act as a national representative for physicians engaged in the study and management of patients with renal disease and related disorders, and to serve as a major resource for the development of national health policy concerning renal disease.

Publications: RPA News, bi-monthly, available at no cost to members.

P.O. Box 815
Wilmette, Illinois 60091
(800) 23-SIMON

Mission: To remove the stigma from incontinence and provide help to sufferers, their families, and the professional care giver.

Publications: Informer (quarterly newsletter), Managing Incontinence: A Guide to Living With the Loss of Bladder Control, and other educational materials.

P.O. Box 6810587
San Antonio, Texas 78280
(512) 681-0587

Mission: Professional membership organization of government service urologists.

c/o Dr. Richard M. Ehrlich
100 UCLA Medical Plaza
Los Angeles, California 90024
(310) 825-6865

Mission: To advance the knowledge of pediatric urology. Members have demonstrated interest and significant experience in pediatric urology.

Urology Department
Brigham and Women's Hospital
75 Francis Street
Boston, Massachusetts 02115
(617) 732-6325

Mission: Professional society for those with primary interest in the field of urologic oncology.

8002 Discovery Drive
Suite 310
Richmond, Virginia 23229
(804) 285-5115
FAX (804) 288-2408

Mission: To provide information and direct grants nationally to post-transplant recipients to offset the costs of immunosuppressive medications.

c/o Felix Rapaport, M.D.
University Hospital-SUNY at Stony Brook
Department of Surgery - Health Science Center
T-19, Room 040
Stony Brook, New York 11794-8192

Mission: To further knowledge in transplantation biology and medicine.

Publications: Transplantation and Transplantation Proceedings.

1100 Boulders Parkway
Suite 500
P.O. Box 13770
Richmond, Virginia 23225
(800) 24-DONOR or (804) 330-8500

Mission: To administer the national organ procurement and transplantation network and the national organ transplantation scientific registry under contracts with the Health Resources and Services Administration, a division of the U.S. Department of Health and Human Services. UNOS' purpose is to promote, facilitate, and scientifically advance organ procurement and transplantation and to administer an equitable organ allocation for all the Nation. The UNOS Scientific Registry is a comprehensive organ transplantation data system enabling scientists and other interested individuals to access information for all liver, heart, heart-lung, pancreas, kidney, and small bowel donors and recipients in the United States since October 1, 1987.

Publications: UNOS Update, UNOS Communique, and educational materials.

36 Executive Park
Suite 120
Irvine, California 92714
(800) 826-0826 or (714) 660-8624

Mission: To offer practical assistance and emotional support to ostomy patients through trained UOA members, and to produce and distribute materials about ostomy care and management.

Publications: Ostomy Quarterly, (magazine); and patient education materials.

Local Groups: 650

6431 Fannin
Suite 6018
Houston, Texas 77030
(713) 792-5640

Mission: To act for charitable, scientific, and educational purposes, particularly in the advancement and dissemination of scientific knowledge in the fields of urology and dynamics and bioengineering of the genitourinary system and the application of such knowledge in the diagnosis and treatment of urologic diseases.

Publication: Urology and Urodynamics.

Box NKUDIC
9000 Rockville Pike
Bethesda, MD 20892
(301) 654-4415

The National Kidney and Urologic Diseases Information Clearinghouse is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, under the U.S. Public Health Service. The clearinghouse was authorized by Congress to focus a national effort on providing information about kidney and urologic diseases to the public, patients and their families, and doctors and other health care professionals. The clearinghouse works with organizations to educate people about kidney and urologic diseases; answers inquiries; develops, reviews, and distributes publications; and coordinates informational resources.

July 1994
U.S. Department of Health
And Human Services
Public Health Service
National Institutes of Health