Directory of Kidney and Urologic Diseases Organizations
This directory lists Government agencies and professional and voluntary associations that provide kidney and urologic diseases-related information and resources. Some of these organizations offer educational materials and other services to patients and the general public, while others primarily serve health care professionals.
Alport Syndrome Foundation (ASF)
1608 East Briarwood Terrace
Phoenix, AZ 85048–9414
Phone/Fax: 480–460–0621
Internet: www.alportsyndrome.org
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 (AACU)
Two Woodfield Lake
1100 East Woodfield Road, Suite 520
Schaumburg, IL 60173
Phone: 847–517–7225
Fax: 847–517–7229
Email: info@aacuweb.org
Internet: www.aacuweb.org
Mission: To stimulate interest in the science and practice of urology and 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 newsletter); AACU FAX (monthly legislative update distributed by facsimile).
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American Association of Genitourinary Surgeons (AAGUS)
University of Michigan
Department of Urology
3875 Taubman Center SPC 5330
1500 East Medical Center Drive
Ann Arbor, MI 48109–5330
Phone: 734–232–4943
Fax: 734–936–8037
Email: sheskett@umich.edu
Internet: www.aagus.org
Mission: To study diseases of the genitourinary system. The AAGUS is an association of leading academic urologists from the United States, Canada, and around the world.
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American Association of Kidney Patients (AAKP)
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
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: aakpRENALIFE (bimonthly magazine); aakpDelicious! (biyearly magazine); KidneyBeginnings (quarterly magazine); AAKP Renal Flash and AAKP Diet Tips and Bits (monthly electronic newsletters).
Local Groups: 21.
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American Board of Urology (ABU)
2216 Ivy Road, Suite 210
Charlottesville, VA 22903
Phone: 434–979–0059
Fax: 434–979–0266
Internet: www.abu.org
Mission: To provide the public with a directory of 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 (AKF)
6110 Executive Boulevard, Suite 1010
Rockville, MD 20852
Phone: 1–800–638–8299 or 1–866–300–2900
Fax: 301–881–0898
Email: helpline@kidneyfund.org
Internet: www.kidneyfund.org
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; patient and public education brochures.
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American Nephrology Nurses’ Association (ANNA)
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
Mission: To advance nephrology nursing practice and positively influence outcomes for patients with kidney disease through advocacy, scholarship, and excellence.
Materials: ANNA Journal; ANNA Update (bimonthly newsletter); Core Curriculum for Nephrology Nursing; position statements; clinical monographs; fact sheets; other publications.
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); quarterly newsletter.
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American Society for Artificial Internal Organs (ASAIO)
ASAIO Headquarters
980 North Federal Highway, Suite 212
Boca Raton, FL 33432–2711
Phone: 561–391–8589
Fax: 561–368–9153
Email: info@asaio.com
Internet: www.asaio.com
Mission: To promote the development, application, and awareness of organ technologies that enhance quality and duration of life.
Materials: ASAIO Journal (bimonthly peer-reviewed journal); ASAIO Abstracts (for annual conference).
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American Society for Histocompatibility and Immunogenetics (ASHI)
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
Mission: To advance the science, education, and application of immunogenetics and transplantimmunology.
Materials: Laboratory Procedures Manual; Human Immunology Journal; membership directory; ASHI Quarterly.
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American Society of Nephrology (ASN)
1725 I Street NW, Suite 510
Washington, DC 20006–2403
Phone: 202–659–0599
Fax: 202–659–0709
Email: sleventhal@asn-online.org
Internet: www.asn-online.org
Mission: To advance the knowledge and practice of nephrology.
Materials: Journal of the American Society of Nephrology (JASN); Highlights (member newsletter); Nephrology Self-Assessment Program (Neph SAP), a supplement to JASN; Clinical Journal of the American Society of Nephrology; Renal Express and Renal Policy Express (electronic newsletters).
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American Society of Pediatric Nephrology (ASPN)
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
Mission: To promote optimal care for children with kidney disease through advocacy, education, and research.
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American Society of Transplantation (AST)
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
Mission: To advance the field of transplantation through the promotion of research education and organ donation to improve patient care.
Materials: ASTP Newsletter (member newsletter); American Journal of Transplantation; AST Lectures in Transplantation; patient education booklets.
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American Society of Transplant Surgeons (ASTS)
2461 South Clark Street, Suite 640
Arlington, VA 22202
Phone: 703–414–7870
Fax: 703–414–7874
Internet: www.asts.org
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. The Society aims to collaborate with existing public and private organizations to promote and encourage education and research in transplantation and participate and assist in the coordination of efforts or formulation of programs by all surgeons, physicians, scientists, agencies, and health personnel, which will provide maximum efficiency and optimal benefit to recipients of transplants.
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American Urogynecologic Society (AUGS)
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
Mission: To represent health care professionals and scientists dedicated to improving the lives of women with pelvic floor disorders, such as pelvic prolapse and bowel and bladder control problems. By encouraging research and education, the AUGS will promote the highest standards of practice in the prevention and treatment of these disorders in an ethical, safe, and effective manner.
Materials: Quarterly newsletter.
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American Urological Association (AUA)
1000 Corporate Boulevard
Linthicum, MD 21090
Phone: 1–866–RING–AUA (1–866–746–4282) (toll-free U.S. only) or 410–689–3700
Fax: 410–689–3800
Email: aua@auanet.org
Internet: www.auanet.org
Mission: To promote the highest standards of urological clinical care through education, research, and the formulation of health care policy.
Materials: Informational brochure about the American Urological Association Foundation; Family Urology (quarterly magazine); patient education brochures.
Councils: Bladder Health Council; Kidney Health Council; Pediatric Urology Health Council; Prostate Health Council.
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American Urological Association Foundation (AUAF)
1000 Corporate Boulevard, Suite 410
Linthicum, MD 21090
Phone: 1–866–RING–AUA (1–866–746–4282) (toll-free U.S. only) or 410–689–3700
Fax: 410–689–3800
Email: auafoundation@auafoundation.org
Internet: www.auafoundation.org or www.UrologyHealth.org
Mission: To partner with physicians, researchers, health care professionals, patients, caregivers, families, and the public to support and promote research, patient/public education, and advocacy to improve the prevention, detection, treatment, and cure of urologic diseases.
Materials: Informational brochures; Urology Health Extra (quarterly newsletter); patient education brochures.
Councils: Patient Education Council; Research Council; Development Council.
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Autosomal Recessive Polycystic Kidney Disease & Congenital Hepatic Fibrosis (ARPKD/CHF) Alliance
P.O. Box 70
Kirkwood, PA 17536
Phone: 1–800–708–8892 or 717–529–5555
Fax: 1–800–807–9110
Email: info@arpkd.org
Internet: www.arpkd.org
Mission: To create and accelerate interest in and awareness of ARPKD/CHF, specifically through research and education programs, and to effectively communicate effective treatments, therapies, and progress to affected patients, families, and the medical community.
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”); ARPKD/CHF Alliance Repository, a blood bank and data bank for affected people.
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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
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. (DiF)
c/o Mike Gandrud
1232 24th Street
Ames, IA 50010
Email: info@diabetesinsipidus.org
Internet: www.diabetesinsipidus.org
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); Water Deprivation Test (protocol for medical professionals).
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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
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 (HNF)
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
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
Mission: To assist patients with IgA nephropathy and their families, serve as a clearinghouse for dissemination of information about IgA nephropathy, and promote research for a possible cure.
Materials: Newsletter; pamphlets.
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International Pediatric Nephrology Association (IPNA)
Secretary General’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 disseminate the knowledge about kidney diseases in children all over the world.
Materials: Pediatric Nephrology; European Journal of Pediatrics and International Urology and Nephrology (online access).
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International Society of Nephrology (ISN)
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
Mission: To advance nephrology worldwide.
Materials: Kidney International; ISN Nature Clinical Practice Nephrology and ISN Nephrology Gateway.
Events: ISN Forefronts Symposia, held three times every 2 years; World Congress of Nephrology, held every other year; ISN Bench to Bedside meetings, held annually.
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International Transplant Nurses Society (ITNS)
1739 E. Carson Street
Box 351
Pittsburgh, PA 15203–1700
Phone: 412–343–4867
Fax: 412–343–3959
Email: itns@msn.com
Internet: www.itns.org
Mission: To promote 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; patient education materials.
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Interstitial Cystitis Association of America (ICA)
100 Park Avenue, Suite 108A
Rockville, MD 20850
Phone: 1–800–HELP–ICA (1–800–435–7422) or 301–610–5300
Fax: 301–610–5308
Email: icamail@ichelp.org
Internet: www.ichelp.org
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; patient and professional education materials.
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Kidney Cancer Association (KCA)
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.kidneycancer.org
Mission: To provide information to patients and physicians, sponsor research on kidney cancer, and 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); public policy papers; free information about kidney cancer and clinical trials.
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Medical Education Institute, Inc. (MEI)
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
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 about 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; 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 (1–800–252–3337) or 843–377–0900
Fax: 843–377–0905
Email: memberservices@nafc.org
Internet: www.nafc.org
Mission: To improve the quality of life of people with incontinence. The NAFC is a leading source of education, advocacy, and support to the public and 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); assorted educational leaflets about topics related to incontinence.
Other Services: Continence Resource Service; market research; information clearinghouse services.
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National Association of Nephrology Technicians/Technologists (NANT)
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.nant.biz
Mission: To promote the highest quality of care for patients with end-stage renal disease (ESRD) 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; regional educational meetings.
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National Diabetes Education Program (NDEP)
1 Diabetes Way
Bethesda, MD 20814–9692
Phone: 1–888–693–NDEP (6337)
TTY: 1–866–569–1162
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: Educational materials about diabetes, 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
TTY: 1–866–569–1162
Fax: 703–738–4929
Email: ndic@info.niddk.nih.gov
Internet: www.diabetes.niddk.nih.gov
Mission: To serve as a diabetes information, education, and referral resource for health professionals and the public. The NDIC is a service of the NIDDK.
Materials: Educational materials about diabetes, available free or at little cost; literature searches on a variety of subjects related to diabetes; Diabetes Dateline (e-newsletter).
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National Foundation for Transplants (NFT)
5350 Poplar Avenue, Suite 430
Memphis, TN 38119
Phone: 1–800–489–3863 or 901–684–1697
Fax: 901–684–1128
Email: info@transplants.org
Internet: www.transplants.org
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 (1–866–454–3639)
Fax: 301–402–8182
Email: nkdep@info.niddk.nih.gov
Internet: www.nkdep.nih.gov
Mission: To reduce the morbidity and mortality caused by kidney disease and its complications.
The 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. The NKDEP is an initiative of the National Institutes of Health
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
Internet: www.kidney.org
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. Through its many affiliates nationwide, the NKF conducts programs in research, professional education, patient and community services, public education, and donation. The work of the NKF, a major voluntary health organization, is funded primarily by public donations.
Materials: Advances in Renal Replacement Therapy; American Journal of Kidney Diseases; CNSW Newsletter, CNNT Newsletter, CRN News and Briefs, Family Focus, For Those Who Give and Grieve, and Transplant Chronicles (newsletters); Journal of Renal Nutrition; Journal of Nephrology Social Work; patient and public education materials.
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
Phone: 1–800–999–6673 or 203–744–0100
TDD: 203–797–9590
Fax: 203–798–2291
Email: orphan@rarediseases.org or RN@rarediseases.org
Internet: www.rarediseases.org
Mission: To help people with rare “orphan” diseases and assist the organizations that serve them. The NORD is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service programs.
Materials: Orphan Disease Update (member newsletter); NORD Resource Guide; Physicians’ Guide to Rare Diseases; free booklets for physicians about several rare disorders.
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The NephCure Foundation
15 Waterloo Avenue, Suite 200
Berwyn, PA 19312
Phone: 1–866–637–2873 or 610–540–0186
Fax: 610–540–0190
Email: info@nephcure.org
Internet: www.nephcure.org
Mission: To support research seeking the cause of nephrotic syndrome and focal segmental glomerulosclerosis, improve treatment, and find a cure.
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Nephrogenic Diabetes Insipidus (NDI) 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
Mission: To support education, research, treatment, and a cure for NDI and 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 Transplant Coordinators Organization (NATCO)
P.O. Box 15384
Lenexa, KS 66285–5384
Phone: 913–492–4612
Fax: 913–895–4652
Email: natco-info@goAMP.com
Internet: www.natco1.org
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); Progress in Transplantation (journal).
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Oxalosis and Hyperoxaluria Foundation (OHF)
201 East 19th Street, Suite 12E
New York, NY 10003
Phone: 1–800–OHF–8699 (1–800–643–8699) or 212–777–0470
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 they affect.
Materials: Patient Handbook; In Touch (newsletter); website resources.
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Polycystic Kidney Disease (PKD) Foundation
9221 Ward Parkway, Suite 400
Kansas City, MO 64114–3367
Phone: 1–800–PKD–CURE (1–800–753–2873) or 816–931–2600
Fax: 816–931–8655
Email: pkdcure@pkdcure.org
Internet: www.pkdcure.org
Mission: To fund research to discover a treatment and a cure for PKD.
Materials: Fact sheets and informational 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: 309–325–7189
Internet: www.prostatitis.org
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 (RPA)
1700 Rockville Pike, Suite 220
Rockville, MD 20852
Phone: 301–468–3515
Fax: 301–468–3511
Email: rpa@renalmd.org
Internet: www.renalmd.org
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 (free bimonthly member newsletter); 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; Capitation Models for ESRD: Methodology and Results.
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Renal Support Network (RSN)
1311 North Maryland Avenue
Glendale, CA 91207
Phone: 818–543–0896
Fax: 818–244–9540
Internet: www.rsnhope.org
Mission: To provide nonmedical services to those affected by chronic kidney disease (CKD). The RSN is a nonprofit, patient-focused, patient-run organization that 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 the 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 RSN); 14 Ways to Help Fellow Patients; Kidney Talk promotional items; 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; 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 (1–800–237–4666) or 847–864–3913
Fax: 847–864–9758
Email: simoninfo@simonfoundation.org
Internet: www.simonfoundation.org
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; videos; slide presentations; other educational materials.
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The Society for Urodynamics and Female Urology (SUFU)
1100 East Woodfield Road, Suite 520
Schaumburg, IL 60173–4950
Phone: 847–517–7225
Fax: 847–517–7229
Email: sufu@wjweiser.com
Internet: www.sufuorg.com
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 (SGSU)
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
Mission: To host the James C. Kimbrough Urological Seminar, an annual educational meeting. This postgraduate educational program in Urology is supported by the various Surgeons General—Army, Navy, Air Force—on a rotating basis and provides a comprehensive update on the full spectrum of urologic diseases and addresses topics specific to Government-service urologists, including care of combat-related injuries and practice management in federal health facilities.
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Society of University Urologists (SUU)
1100 East Woodfield Road, Suite 520
Schaumburg, IL 60173–4950
Phone: 847–517–7225
Fax: 847–517–7229
Email: info@suunet.org
Internet: www.suunet.org
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 (SUNA)
East Holly Avenue, Box 56
Pitman, NJ 08071–0056
Phone: 1–888–TAP–SUNA (1–888–827–7862) or 856–256–2335
Fax: 856–589–7463
Email: suna@ajj.com
Internet: www.suna.org
Mission: To promote 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; Continuing Education Articles and Professional Enhancement: Getting Ready for Certification.
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The Transplantation Society (TTS)
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
Mission: To provide information and direct grants nationally to post-transplant recipients to offset the costs of immunosuppressive medications.
Materials: Transplantation; Transplantation Proceedings.
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Transplant Recipients International Organization (TRIO)
2100 M Street NW, #170–353
Washington, DC 20037–1233
Phone: 1–800–TRIO–386 (1–800–874–6386) or 202–293–0980
Email: info@trioweb.org
Internet: www.trioweb.org
Mission: To improve the quality of life of transplant candidates, recipients, donors, and their families. The TRIO is an independent, not-for-profit, international organization that, through the TRIO Headquarters and a network of chapters, 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 about developments in organ and tissue donation, transplantation, medications, social issues, and finances, as well as information about 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 about issues in the field of transplantation and organ and tissue donation to the general public.
Materials: Lifelines (bimonthly newsletter); Membership Update (for members).
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United Network for Organ Sharing (UNOS)
P.O. Box 2484
Richmond, VA 23218
Phone: 1–888–894–6361 (Patient Hotline) or 804–782–4800
Fax: 804–782–4817
Internet: www.unos.org
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 (journal); 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
Email: info@uoa.org
Internet: www.uoaa.org
Mission: To produce and distribute materials about ostomy care and management, offer practical assistance and emotional support to ostomy patients, and sponsor annual youth rally and state and regional conferences for local affiliates. The UOAA has 500 chapters to serve people locally.
Materials: Ostomy Quarterly (journal); patient education pamphlets; self-care handbooks; audiovisual program; The Phoenix (magazine).
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Urology Society of America
305 Second Avenue, Suite 200
Waltham, MA 02451
Phone: 781–895–9078
Fax: 781–895–9088
Mission: To address 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.
May 2009
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