Directory of Kidney and Urologic Diseases Organizations
This directory lists voluntary, governmental, and private organizations. Some of the organizations offer educational materials and other services to patients and the public; others primarily serve health care professionals.
Alport Syndrome Foundation
1608 E. Briarwood Terrace
Phoenix, AZ 85048–9414
Phone: 480–460–0621
Fax: 480–460–0621
Internet: www.alportsyndrome.org
Sharon Lagas, President
Mission: To educate and support patients and families that have been affected by Alport Syndrome with the goal of funding research to find more effective treatment protocols and a cure.
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American Association of Clinical Urologists
1111 North Plaza Drive, Suite 550
Schaumburg, IL 60173
Phone: 847–517–1050
Fax: 847–517–7229
Email: info@aacuweb.org
Internet: www.aacuweb.org
Jeffrey E. Kaufman, M.D., President
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.
Materials: AACU News (bimonthly) and AACU FAX (monthly legislative update distributed by facsimile).
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American Association of Genitourinary Surgeons
American Association of Genitourinary Surgeons
41 Mall Road
Burlington, MA 01805
Phone: 781–744–5796
Fax: 781–744–5767
Email: Barbara.T.Lamont@Lahey.org
Patrick C. Walsh, M.D., President
Mission: Professional society of urologists elected into membership because of their outstanding contributions to urology.
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American Association of Kidney Patients
3505 East Frontage Road, Suite 315
Tampa, FL 33607
Phone: 1–800–749–2257 or 813–636–8100
Fax: 813–636–8122
Email: info@aakp.org
Internet: www.aakp.org
Kris Robinson, Executive Director
Mission: To improve the lives of fellow kidney patients and their families by helping them deal with the physical, emotional, and social impact of kidney disease.
Materials: Renalife (quarterly journal) and The Renal Flash (monthly electronic newsletter).
Local Groups: 21
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American Board of Urology
2216 Ivy Road, Suite 210
Charlottesville, VA 22903
Phone: 434–979–0059
Fax: 434–979–0266
Linda M. Shortliffe, M.D., President
Stuart S. Howards, M.D., Executive Secretary
Mission: To identify for the public's knowledge those physicians who have satisfied the board's criteria for certification and recertification in the specialty of urology.
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American Kidney Fund
6110 Executive Boulevard, Suite 1010
Rockville, MD 20852
Phone: 1–800–638–8299 or 1–866–300–2900 (Spanish)
Fax: 301–881–0898
Email: helpline@kidneyfund.org
Internet: www.kidneyfund.org
Karen Sendelback, C.F.R.E., Executive Director
Mission: To provide direct financial assistance, comprehensive educational programs, research grants, and community service projects for the benefit of kidney patients.
Materials: AKF Advocate, Clinical Strategies: The AKF Newsletter for Nephrology Professionals, and patient and public education brochures.
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American Nephrology Nurses’ Association
East Holly Avenue
Box 56
Pitman, NJ 08071–0056
Phone: 1–888–600–2662 or 856–256–2320
Fax: 856–589–7463
Email: anna@ajj.com
Internet: www.annanurse.org
JoAnne E. Gilmore, B.S.N., R.N., C.N.N., President
Mission: To advance nephrology nursing practice and positively influence outcomes for patients with kidney or other disease processes requiring replacement therapies through advocacy, scholarship, and excellence.
Materials: ANNA Journal, ANNA Update (bimonthly newsletter), Core Curriculum for Nephrology Nursing, position statements, and clinical monographs.
Local Groups: 4 regions, 100 chapters.
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American Prostate Society
P.O. Box 870
Hanover, MD 21076
Phone: 410–859–3735 (Tues. & Fri. only)
Fax: 410–850–0818
Email: ameripros@mindspring.com
Internet: www.americanprostatesociety.com
Mission: To increase knowledge of prostate diseases and encourage the establishment of centers for diagnosis and treatment.
Materials: What You Don't Know About Your Prostate Can Kill You (brochure), Medication Versus Surgery (brochure), and quarterly newsletter.
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American Society for Artificial Internal Organs
ASAIO Headquarters
P.O. Box C
Boca Raton, FL 33429–0468
Phone: 561–391–8589
Fax: 561–368–9153
Email: info@asaio.com
Internet: www.asaio.com
James W. Long, Jr, M.D., Ph.D., President
Mission: ASAIO promotes the development, application, and awareness of organ technologies that enhance quality and duration of life.
Materials: ASAIO Journal (bimonthly peer-reviewed journal) and ASAIO Abstracts (for annual conference).
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American Society for Histocompatibility and Immunogenetics
15000 Commerce Parkway, Suite C
Mt. Laurel, NJ 08054
Phone: 856–638–0428
Fax: 856–439–0525
Email: info@ashi-hla.org
Internet: www.ashi-hla.org
Kimberly Glenn, Executive Director
Mission: A professional society dedicated to advancing the science and practice of immunogenetics and its impact on the quality of human life.
Materials: Laboratory Procedures Manual, Human Immunology Journal, membership directory, and ASHI Quarterly.
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American Society of Nephrology
1725 I Street NW, Suite 510
Washington, DC 20006–2403
Phone: 202–659–0599
Fax: 202–659–0709
Email: email@asn-online.org
Internet: www.asn-online.org
Karen Campbell, Executive Director
Mission: To advance the knowledge and practice of nephrology.
Materials: Journal of the American Society of Nephrology (JASN), Highlights (member newsletter), and Nephrology Self-Assessment Program (Neph SAP), a supplement to JASN.
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American Society of Pediatric Nephrology
3400 Research Forest Drive, Suite B7
The Woodlands, TX 77381
Phone: 281–419–0052
Fax: 281–419–0082
Email: info@aspneph.com
Internet: www.aspneph.com
Sharon P. Andreoli, M.D., President
Mission: To promote public and professional educational programs in pediatric nephrology.
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American Society of Transplant Surgeons
2461 South Clark Street, Suite 640
Arlington, VA 22202
Phone: 703–414–7870
Fax: 703–414–7874
Internet: www.asts.org
Katrina Crist, Executive Director
Mission: To promote and encourage education and research with respect to organ and tissue transplantation so as to facilitate progress in the saving of lives and/or enhancing the quality of lives of patients afflicted with end-stage organ failure. To collaborate with existing public and private organizations to promote and encourage education and research in transplantation and to participate and assist in the coordination of efforts or formulation of programs by all surgeons, physicians, scientists, agencies, and health personnel, which will provide maximal efficiency and optimal benefit to recipients of transplants.
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American Society of Transplantation
15000 Commerce Parkway, Suite C
Mt. Laurel, NJ 08054
Phone: 856–439–9986
Fax: 856–439–9982
Email: ast@ahint.com
Internet: www.a-s-t.org
Jeffrey S. Crippin, M.D., President
Mission: To promote and encourage education and research with respect to transplantation medicine and immunology. To provide a forum for the exchange of scientific information related to transplantation medicine and immunology. To give physicians and allied scientists interested in transplantation medicine and immunology an effective, unified, and authoritative voice in dealing with other Government, medical, and private agencies and organizations.
Materials: ASTP Newsletter (member newsletter), ASTP Primer on Transplantion, and AST Washington Roundup.
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American Urogynecologic Society
2025 M Street NW, Suite 800
Washington, DC 20036
Phone: 202–367–1167
Fax: 202–367–2167
Email: info@augs.org
Internet: www.augs.org
Stephen C. Kemp, C.A.E., Executive Director
Joseph Montella, M.D., President
Mission: To promote research and education in urogynecology and to improve care for women with lower urinary tract disorders.
Materials: Quarterly newsletter.
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American Urological Association
1000 Corporate Boulevard, Suite 410
Linthicum, MD 21090
Phone: 1–866–RINGAUA (1–866–746–4282) or 410–689–3700
Fax: 410–689–3800
Email: aua@auanet.org
Internet: www.auanet.org
Michael T. Sheppard, C.P.A., C.A.E., Executive Director
Mission: To provide research grants, patient and public education and awareness, Government relations, and patient support group activities.
Materials: Informational brochure about the American Urological Association Foundation, Family Urology (quarterly magazine), and patient education brochures.
Councils: Bladder Health Council, Kidney Health Council, Pediatric Urology Health Council, Prostate Health Council, Sexual Function Health Council.
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American Urological Association Foundation
1000 Corporate Boulevard, Suite 410
Linthicum, MD 21090
Phone: 1–800–828–7866
Email: patienteducation@auafoundation.org
Internet: www.auafoundation.org
John Huber, Executive Director
Mission: The Foundation partners with physicians, researchers, health care professionals, patients, caregivers, families, and the public and is established to support and promote research, patient/public education, and advocacy that improve the prevention, detection, and treatment of urologic diseases.
Materials: Informational brochures, Urology Health Extra (quarterly newsletter), and patient education brochures.
Councils: Patient Education Council, Research Council, Development Council.
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ARPKD/CHF Alliance
Autosomal Recessive Polycystic Kidney Disease & Congenital Hepatic Fibrosis Alliance
38 John Drive
Kirkwood, PA 17536
Phone/Fax: 717–529–5555
Email: info@arpkd.org
Internet: www.arpkdchf.org/
Mission: To educate, advocate, support, and advance research specific to autosomal recessive polycystic kidney disease (ARPKD) and congenital hepatic fibrosis (CHF).
Materials: Free ARPKD/CHF Alliance newsletters and educational materials, email listserv, bereavement information and resources, “Clinical Care Considerations”—managed care guidelines for “informed individualized decision making,” and “CARPKD/CHF Alliance Repository”—a blood and data bank of affected persons.
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Cystinuria Support Network
21001 NE 36th Street
Sammamish, WA 98074
Phone: 425–868–2996
Fax: 425–897–0675
Email: Cystinuria@aol.com
Internet: www.cystinuria.com
Jann Ledbetter, Founder
Mission: To provide a resource for putting individuals in touch with each other for support and practical advice dealing with issues concerning cystinuria.
Materials: Cystinuria Support Network Newsletter.
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The Diabetes Insipidus Foundation, Inc.
Business Postal Address
c/o Mike Gandrud
1232 24th Street
Ames, IA 50010
Email: info@diabetesinsipidus.org
Internet: www.diabetesinsipidus.org
Gary Robertson, M.D., Director
Mission: To foster improved treatment and ultimately the prevention and cure of all forms of diabetes insipidus through research; to promote a greater public awareness and understanding of the disease; and to serve patients and their families with informational material.
Materials: Endless Water (quarterly newsletter).
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Endourological Society
Long Island Jewish Medical Center
Department of Urology
270–05, 76th Avenue
New Hyde Park, NY 11040
Phone: 718–470–3900
Fax: 718–643–8126
Email: michelelij@aol.com
Internet: www.endourology.org
Michele Paoli, Executive Secretary
Arthur D. Smith, M.D., Editor
Mission: To educate urologists about research and treatment in the management of endourological problems.
Materials: Journal of Endourology.
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Hereditary Nephritis Foundation
1390 West 6690 South, #202H
Murray, UT 84123–6914
Phone/Fax: 801–262–5901
Email: KayRJohnson@MSN.com
Internet: www.cc.utah.edu/~cla6202/HNF.htm
Kay R. Johnson, President
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.
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IgA Nephropathy Support Network
89 Ashfield Road
Shelburne Falls, MA 01370
Phone: 413–625–9339
Internet: www.igansupport.org/index.html
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.
Materials: Newsletter and pamphlets.
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International Pediatric Nephrology Association
Treasurer’s Office
Isidro B. Salusky, M.D.
David Geffen School of Medicine at UCLA
10833 Le Conte Avenue
CHS 27–066, MC 169717
Los Angeles, CA 90095
Phone: 310–206–9295
Email: Isalusky@mednet.ucla.edu
Internet: www.ipna-online.org
Mission: To promote professional education and improve health care for children with kidney and urologic diseases.
Materials: Pediatric Nephrology.
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International Society of Nephrology
300 Avenue de Tervuren
B–1150 Brussels
Belgium
Phone: +32–2–743–1546
Fax: +32–2–743–1550
Email: info@isn-online.org
Internet: www.nature.com/isn/
William G. Couser, President
Mission: To advance nephrology worldwide.
Materials: Kidney International, ISN Nature Clinical Practice Nephrology (launched November 2005), ISN Nephrology Gateway (online) (launched November 2005).
Events: ISN Forefronts Symposia (three times every 2 years), World Congress of Nephrology (every other year), ISN Bench to Bedside meetings (annual as of 2006).
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International Transplant Nurses Society
1739 E. Carson Street
Box 351
Pittsburgh, PA 15203–1700
Phone: 412–343–ITNS (4867)
Fax: 412–343–3959
Email: itns@msn.com
Internet: www.itns.org
Mission: Committed to the promotion of excellence in transplant clinical nursing through the provision of educational and professional growth opportunities, interdisciplinary networking and collaborative activities, and transplant nursing research.
Materials: ITNS Newsletter and patient education materials.
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Interstitial Cystitis Association of America, Inc. (ICA)
110 North Washington Street, Suite 340
Rockville, MD 20850
Phone: 1–800–HELP–ICA (435–7422) or 301–610–5300
Fax: 301–610–5308
Email: icamail@ichelp.org
Internet: www.ichelp.org
Barbara Gordon, Executive Director
Mission: To assist patients with interstitial cystitis (IC), to educate the medical community about IC, and to promote IC research.
Materials: ICA (brochure), ICA Update (quarterly newsletter), transcripts of annual meetings, and patient and professional education materials.
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Kidney Cancer Association
1234 Sherman Avenue, Suite 203
Evanston, IL 60202–1378
Phone: 1–800–850–9132 or 847–332–1051
Fax: 847–332–2978
Email: office@curekidneycancer.org
Internet: www.curekidneycancer.org
William J. Perry, President
Mission: To provide information to patients and physicians; to sponsor research on kidney cancer; and to act as an advocate on behalf of patients with the Federal Government, insurance companies, and employers.
Materials: We Have Kidney Cancer (56-page booklet for patients), Kidney Cancer News (monthly e-newsletter), and public policy papers.
Chapters: 24 major cities including New York, Los Angeles, and Chicago.
Annual Convention: In July for both patients and physicians.
Other Services: Free information on kidney cancer and clinical trials.
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Medical Education Institute, Inc.
414 D’Onofrio Drive, Suite 200
Madison, WI 53719
Phone: 608–833–8033
Fax: 608–833–8366
Email: schatell@meiresearch.org
Internet: www.meiresearch.org, www.lifeoptions.org,
www.kidneyschool.org, www.homedialysis.org
Dorian Schatell, M.S., Executive Director
Mission: To help people with chronic diseases learn to manage and improve their health.
Materials: In Control (formerly Renal Rehabilitation Report) published through Nephrology News & Issues; online interactive Kidney School modules on subjects such as coping, sexuality, and nutrition; free booklets for dialysis patients and professionals on encouragement, employment, exercise, and education, plus a staff idea guide and assessment manual for the dialysis unit; teaching tools with patient interest checklists, goal-setting worksheets, and fact sheets; audiotapes; videos; and posters. The Home Dialysis Central Website provides information about all types of home dialysis, including a database of U.S. clinics that offer home treatments.
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National Association for Continence (NAFC)
P.O. Box 1019
Charleston, SC 29402–1019
Phone: 1–800–BLADDER (252–3337) or 843–377–0900
Fax: 843–377–0905
Email: memberservices@nafc.org
Internet: www.nafc.org
Nancy Muller, Executive Director
Mission: To improve the quality of life for people with incontinence. NAFC 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.
Materials: Quality Care (quarterly newsletter), The Resource Guide (annual directory of products and services for incontinence), and assorted educational leaflets on topics related to incontinence.
Other Services: Continence Resource Service, market research, and information clearinghouse services.
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National Association of Nephrology Technicians/Technologists
11 West Monument Avenue, Suite 510
P.O. Box 2307
Dayton, OH 45401–2307
Phone: 1–877–607–NANT (6268) or 937–586–3705
Fax: 937–586–3699
Email: nant@nant.meinet.com
Internet: www.dialysistech.org
Francine W. Rickenbach, C.A.E., Executive Director
Mission: To promote the highest quality of care for end-stage renal disease (ESRD) patients through education and professionalism by providing educational opportunities for the technical practitioner and other members of the integrated care team, representing the technical professional in the regulatory and legislative arena, developing technical professionals in leadership roles, achieving recognition for the role and significant contribution of the technical practitioner to the total care of the ESRD patient, and serving as a resource for the ESRD community to accomplish each of these goals.
Materials: Bimonthly newsletter, educational and technical manuals, and regional educational meetings.
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National Diabetes Education Program (NDEP)
1 Diabetes Way
Bethesda, MD 20892–3560
Phone: 1–800–438–5383
Fax: 703–738–4929
Email: ndep@mail.nih.gov
Internet: www.ndep.nih.gov
Mission: To improve the treatment and outcomes for people with diabetes, to promote early diagnosis, and to prevent or delay the onset of diabetes.
Materials: Diabetes education materials are available free or at little cost.
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National Diabetes Information Clearinghouse (NDIC)
1 Information Way
Bethesda, MD 20892–3560
Phone: 1–800–860–8747
Fax: 703–738–4929
Email: ndic@info.niddk.nih.gov
Internet: www.diabetes.niddk.nih.gov
Mission: To serve as a diabetes informational, educational, and referral resource for health professionals and the public. NDIC is a service of the NIDDK.
Materials: Diabetes education materials are available free or at little cost. Literature searches on a myriad of subjects related to diabetes are provided. NDIC publishes Diabetes Dateline, a quarterly newsletter.
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1102 Brookfield Road, Suite 200
Memphis, TN 38119
Phone: 1–800–489–3863 or 901–684–1697
Fax: 901–684–1128
Email: info@transplants.org
Internet: www.transplants.org
Larry Pardue, Chairman and President
Mission: To assist transplant candidates and recipients in raising funds for transplant-related care and needs not covered by insurance.
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National Kidney Disease Education Program (NKDEP)
3 Kidney Information Way
Bethesda, MD 20892
Phone: 1–866–4–KIDNEY or 1–866–454–3639
Fax: 301–402–8182
Email: nkdep@info.niddk.nih.gov
Internet: www.nkdep.nih.gov
Mission: NKDEP is an initiative of the National Institutes of Health, designed to reduce the morbidity and mortality caused by kidney disease and its complications.
NKDEP aims to raise awareness of the seriousness of kidney disease, the importance of testing those at high risk (those with diabetes, high blood pressure, or a family history of kidney failure), and the availability of treatment to prevent or slow kidney failure.
Materials: Educational materials about kidney disease, available free or at little cost.
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National Kidney Foundation (NKF)
30 East 33rd Street
New York, NY 10016
Phone: 1–800–622–9010 or 212–889–2210
Fax: 212–689–9261
Email: info@kidney.org
Internet: www.kidney.org
Sheila Weiner, Patient Services Director
Mission: 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.
Materials: Advances in Renal Replacement Therapy, American Journal of Kidney Diseases, CNSW Newsletter, CRN News and Briefs (newsletter), CNNT Newsletter, Family Focus (newsletter), Transplant Chronicles (newsletter), Journal of Renal Nutrition, Journal of Nephrology Social Work, For Those Who Give and Grieve (newsletter), and patient and public education materials.
State Groups: 52
Other Services: Council of Nephrology Nurses and Technicians (CNNT), Council of Nephrology Social Workers (CNSW), Council on Renal Nutrition (CRN), Council on Dialysis, Council on Transplantation, Council on Pediatric Nephrology/Urology, Council on Glomerulonephritis, Council on Polycystic Kidney Disease, National Donor Family Council, Patient & Family Council, transAction Council, Council on Diabetic Kidney Disease, Council on Hypertension.
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National Organization for Rare Disorders (NORD)
55 Kenosia Avenue, P.O. Box 1968
Danbury, CT 06813–1968
Phone: 1–800–999–6673 or 203–744–0100
Fax: 203–798–2291
TDD: 203–797–9590
Email: orphan@rarediseases.org or RN@rarediseases.org
Internet: www.rarediseases.org
Carolyn Asbury, Ph.D., Chair
Mission: A unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them; committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.
Materials: Member newsletter—Orphan Disease Update (ODU); NORD Resource Guide; Physicians Guide for Rare Disorders; booklets—free guides for physicians about several rare disorders.
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The NephCure Foundation
15 Waterloo Avenue, Suite 200
Berwyn, PA 19312
Phone: 1–866–637–4287 (NEPHCURE) or 610–540–0186
Fax: 610–540–0190
Email: info@nephcure.org
Internet: www.nephcure.org
Irving Smokler, Ph.D., President
Mission: To support research seeking the cause of nephrotic syndrome and focal segmental glomerulosclerosis, improve treatment, and find the cure.
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Nephrogenic Diabetes Insipidus Foundation
Main Street
P.O. Box 1390
Eastsound, WA 98245
Phone: 1–888–376–6343
Fax: 1–888–376–6356
Email: info@ndif.org
Internet: www.ndif.org
Bill Wulff, President
Mission: To support education, research, treatment, and cure for nephrogenic diabetes insipidus. To create a communication channel to serve the entire NDI community: patients and their families, researchers, physicians, and other health care providers.
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North American Society for Dialysis and Transplantation
4010 Bentley Drive
Pearland, TX 77584
Phone: 281–997–1944
Fax: 281–997–0518
Email: lbrazil@nasdat.org
Internet: www.nasdat.org
Laura Brazil-Nichols (Executive Director’s office)
Mission: Specialty conference on current issues in nephrology, dialysis, and transplantation.
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North American Transplant Coordinators Organization
NATCO Executive Office
P.O. Box 15384
Lenexa, KS 66285–5384
Phone: 913–492–3600
Fax: 913–599–5340
Email: natco-info@goAMP.com
Internet: www.natco1.org
Marian A. O’Rourke, R.N., C.C.T.C., President
Mission: To support, develop, and advance the knowledge and practice of its members and enhance the quality, effectiveness, and integrity of donation and transplantation.
Materials: In Touch (newsletter) and Progress in Transplantation (journal).
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Oxalosis and Hyperoxaluria Foundation (OHF)
Attention: Kim Hollander, Executive Director
201 East 19th Street, Suite 12E
New York, NY 10003
Phone: 212–777–0470 or 1–800–OHF–8699
Fax: 212–777–0471
Email: kimh@ohf.org
Internet: www.ohf.org
Mission: To promote research to find a cure for oxalosis, primary hyperoxaluria, and related stone diseases and improve the care and treatment of those it affects.
Materials: Patient Handbook, In Touch (newsletter), and website resources.
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Polycystic Kidney Disease Foundation
9221 Ward Parkway, Suite 400
Kansas City, MO 64114–3367
Phone: 1–800–PKD–CURE (753–2873) or 816–931–2600
Fax: 816–931–8655
Email: pkdcure@pkdcure.org
Internet: www.pkdcure.org
Dan Larson, President and CEO
Mark Stone, Vice President of Programs and Administration
Mission: To fund research to discover a treatment and a cure for polycystic kidney disease (PKD).
Materials: Polycystic Kidney Disease fact sheets and information brochures, PKD Progress (quarterly newsletter), online books covering topics such as Autosomal Recessive Polycystic Kidney Disease (ARPKD), Questions and Answers, The Family and ADPKD, and Health Tips for Living with PKD.
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The Prostatitis Foundation
1063 30th Street, Box 8
Smithshire, IL 61478
Phone: 1–888–891–4200
Fax: 309–325–7184
Internet: www.prostatitis.org
Mike Hennenfent, President
Mission: To provide support to men with prostatitis and to push for prostatitis research funding.
Materials: The Prostatitis Foundation Information Packet.
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Renal Physicians Association
1700 Rockville Pike, Suite 220
Rockville, MD 20852
Phone: 301–468–3515
Fax: 301–468–3511
Email: rpa@renalmd.org
Internet: www.renalmd.org
Robert Provenzano, M.D., President
Dale Singer, M.H.A., Executive Director
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.
Materials: RPA News (bimonthly), available at no cost to members; clinical practice guideline on adequacy of hemodialysis; Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis; Appropriate Patient Preparation for Renal Replacement Therapy; ESRD in the Age of Managed Care: A Primer on Capitation; The Renal Physicians Guide to Nephrology Practice; and Capitation Models for ESRD: Methodology and Results.
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Renal Support Network
1311 N. Maryland Avenue
Glendale, CA 91207
Phone: 818–543–0896
Fax: 818–244–9540
Internet: www.rsnhope.org
Lori Hartwell, Executive Director and President
Mission: The Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides 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.
Materials: RSN brochure, Live and Give newsletter, weKan (Wellness and Education Kidney Advocacy Network) postcard, renALERT (Breaking News from the Renal Support Network), 14 Ways to Help Fellow Patients, Kidney Talk Promotional Items, and the Patient Directory.
Other Services: Renal Teen Prom, Kidney Talk (Internet radio show), PEPP (Patients Educating Patients and Professionals), weKan Program, Patient Lifestyle Meetings, Renal Resources by State, National Renal Resources, and the annual National Patient Meeting.
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The Simon Foundation for Continence
P.O. Box 815
Wilmette, IL 60091
Phone: 1–800–23–SIMON (237–4666) or 847–864–3913
Fax: 847–864–9758
Email: simoninfo@simonfoundation.org
Internet: www.simonfoundation.org
Cheryle B. Gartley, President
Mission: To remove the stigma from incontinence and provide help to sufferers, their families, and the professional caregiver.
Materials: The Informer (quarterly newsletter), Managing Incontinence: A Guide to Living with the Loss of Bladder Control, several videos, slide presentations, and other educational materials.
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The Society for Urodynamics and Female Urology
1111 North Plaza Drive, Suite 550
Schaumburg, IL 60173–4950
Phone: 847–517–7225
Fax: 847–517–7229
Email: sufu@wjweiser.com
Internet: www.sufuorg.com
Roger Dmochowski, M.D., President
Mission: To act for charitable, scientific, and educational purposes, particularly in the advancement and dissemination of scientific knowledge in the fields of neurourology and urodynamics, including voiding dysfunction, female urology, incontinence, impotency, and bioengineering of the genitourinary system, and the application of such knowledge in the diagnosis and treatment of urologic diseases.
Materials: Neurourology and Urodynamics.
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Society of Government Service Urologists
P.O. Box 681965
San Antonio, TX 78268–7202
Phone: 210–681–5800
Fax: 210–680–7725
Email: sgsu@satx.rr.com
Internet: www.sgsu.org
LTC Douglas W. Soderdahl, M.D., President
Mission: Professional membership organization of Government service urologists.
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Society of University Urologists
1111 N. Plaza Drive, Suite 550
Schaumburg, IL 60173–4950
Phone: 847–517–7225
Fax: 847–517–7229
Email: info@suunet.org
Internet: www.suunet.org
Marc S. Cohen, M.D., President
Wendy J. Weiser, Executive Director
Mission: To promote high standards in the urology field by acting as a forum for the interchange of ideas and materials relative to university urology educational programs and by fostering a balance of all phases of academic work in urology. Members consist of urologists holding faculty or teaching positions in residency training programs.
Materials: Objectives for Urology Residency Education (guidelines for educational units).
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Society of Urologic Nurses and Associates
East Holly Avenue
Box 56
Pitman, NJ 08071–0056
Phone: 1–888–TAP–SUNA (827–7862) or 856–256–2335
Fax: 856–589–7463
Email: suna@ajj.com
Internet: www.suna.org
Anthony J. Jannetti, Executive Director
Mission: Professional organization committed to excellence in patient care standards and a continuum of quality care, clinical practice, and research through education of its members, patients, family, and community.
Materials: Program Newsletter, Urologic Nursing (official journal), Standards of Urologic Nursing Practice, Urologic Nursing: A Study Guide, Telephone Nursing Practice in Adult Oncology, Understanding Erectile Dysfunction: Patient Evaluation and Treatment Options, A Practical Guide to Performing Urodynamics, and Continuing Education Articles and Professional Enhancement: Getting Ready for Certification.
Local Groups: 32
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Transplant Recipients International Organization (TRIO)
2100 M St, NW, #170–353
Washington, DC 20037–1233
Phone: 1–800–TRIO–386 or 202–293–0980
Email: info@trioweb.org
Internet: www.trioweb.org
J.T. Rhodes, President
Mission: An independent, not-for-profit, international organization committed to improving the quality of life of transplant candidates, recipients, donors, and their families. Through the TRIO Headquarters and a network of chapters, TRIO serves its members in the areas of
Awareness: Promoting organ and tissue donation as an important social responsibility. Developing and supporting mechanisms to improve availability of organs and tissues on an equitable basis to meet the needs of transplant candidates.
Support: Providing support to transplant candidates, recipients, donors, and their families to help alleviate the stresses and problems associated with the transplantation process.
Education: Providing transplant candidates, recipients, donors, and their families with current information on developments in organ and tissue donation, transplantation, medications, social issues, and finances, as well as information on initiatives in the field of transplantation by Federal, state, and local government bodies.
Advocacy: Making known to Federal, state, and local government bodies the concerns and needs that affect the welfare of transplant candidates, recipients, donors, and their families. Effectively communicating their views to the general public on issues in the field of transplantation and organ and tissue donation.
Materials: Lifelines (bimonthly) and Membership Update (once a month for members).
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The Transplantation Society
International Headquarters
1255 University Street, Suite 325
Montreal, QC, Canada H3B 3B4
Phone: 514–874–1717
Fax: 514–874–1716
Email: info@transplantation-soc.org
Internet: www.transplantation-soc.org
Nicholas L. Tilney, President
Mission: To provide information and direct grants nationally to post-transplant recipients to offset the costs of immunosuppressive medications.
Materials: Transplantation and Transplantation Proceedings.
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United Network for Organ Sharing (UNOS)
P.O. Box 2484
Richmond, VA 23218
Phone: 804–782–4800 or 1–888–894–6361 (Patient Hotline)
Fax: 804–782–4817
Internet: www.unos.org
Walter K. Graham, Executive Director, President and CEO
Mission: To advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology, and policy development.
Materials: UNOS Update and educational materials.
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United Ostomy Associations of America
UOAA
P.O. Box 66
Fairview, TN 37062–0066
Phone: 1–800–826–0826 or 949–660–8624
Fax: 949–660–9262
Email: info@uoa.org
Internet: www.uoaa.org
Ken Aukett, President of Management Board of Directors
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.
Materials: Ostomy Quarterly (magazine) and patient education materials.
Local Groups: 550
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Urology Society of America
305 Second Avenue, Suite 200
Waltham, MA 02451
Phone: 781–895–9078
Fax: 781–895–9088
Philip Mosca, M.D., President
Mission: Professional membership society dedicated to addressing all aspects of lithotripsy as a medical treatment for stone disease.
Materials: ALS Quarterly News.
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National Kidney and Urologic Diseases Information Clearinghouse
3 Information Way
Bethesda, MD 20892–3580
Phone: 1–800–891–5390
TTY: 1–866–569–1162
Fax: 703–738–4929
Email: nkudic@info.niddk.nih.gov
Internet: www.kidney.niddk.nih.gov
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services. Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.
Publications produced by the Clearinghouse are carefully reviewed by both NIDDK scientists and outside experts.
This publication is not copyrighted. The Clearinghouse encourages users of this publication to duplicate and distribute as many copies as desired.
January 2007
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