Home | About Us | Latest News | Speakers and Events | Educational Resources | Patient Stories | Contact Us

Other Organizations and Resources

RELATED DISEASES

American Autoimmune Related Diseases Association
Phone: 506.776.3900
E-Mail: aarda@aol.com
Website: http://www.aarda.org
The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical and efficient manner.

American Chronic Pain Association (ACPA)
P.O. Box 850
Rocklin, CA 95677
Phone: 800-533-3231
E-Mail: ACPA@pacbell.net
Website: www.theacpa.org
ACPA’s mission is to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain.
 
To raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.

CFIDS Association of America, The
PO Box 220398
Charlotte, NC 28222-0398
Phone: 704.365.2343
Website: http://www.cfids.org  
K. Kimberly McCleary, President & CEO
kkmccleary@cfids.org
Suzanne D. Vernon, Ph.D., Scientific Director
704-364-0016
sdvernon@cfids.org
The CFIDS Association leads the nation in the depth and breadth of advocacy activities conducted on behalf of persons with CFIDS (PWCs). Since 1992, the Association has worked closely with professional lobbyists from The Sheridan Group to build an effective public policy program that focuses on the most pressing issues facing persons with CFIDS.

Crohn's and Colitis Foundation of America, The
Phone: 800.932.2423
E-Mail: info@ccfa.org  
Website: http://www.ccfa.org  
The Crohn's and Colitis Foundation of America is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. 
Endometriosis Association, The
Phone: 414.355.2200
Fax: 414.355.6065
E-Mail: endo@endometriosisassn.org 
Website: http://www.endometriosisassn.org
PCBs, Polychlorinated biphenyls, have been in the news recently because of their discovery in recreational areas treated by contaminated fertilizer manufactured from sewage sludge. Since 1992, the Endometriosis Association, an international nonprofit organization headquartered in Milwaukee, Wisconsin, has pioneered research linking PCBs (part of a chemical family called dioxins) to the development of endometriosis, a painful and debilitating disease afflicting 5.5 million women in the U.S. and Canada from ages eight to eighty years old. This chronic disease often causes ongoing pain, infertility, and immune problems.

International Foundation for Functional Gastrointestinal Disorders (IFFGD), The
PO Box 170864
Milwaukee, WI 53217-8076
Phone: 888.964.2001
Phone: 414.964.1799
E-Mail: mailto:iffgd@iffgd.org
Website: http://www.iffgd.org 
IFFGD is a Public Charity designated under the U.S. IRS code 501(c)(3). We are a registered nonprofit education and research organization. Our mission is to inform, assist and support people affected by gastrointestinal (GI) disorders. 
 
Founded in 1991 by Nancy Norton and William Norton, IFFGD has been working with patients (both adults and children), families, physicians, practitioners, investigators, employers, regulators, and others to broaden understanding about gastrointestinal disorders and support or encourage research.

International Volunteers in Urology, Inc.
3269 S. Main Street, Suite 230
Salt Lake City, Utah 84115
801-524-0201
Website: www.ivumed.org
 
Catherine deVries, M.D., Founder & President, 801-524-0201
Melina L. Vierig, MBA, Executive Director, 801-524-0176
What’s in a name? IVUmed has changed! Formerly IVU, or International Volunteers in Urology, IVUmed has expanded. Patient care requires a team approach – sometimes a very diverse team! While we have always included anesthesiologists, pediatricians and nurses on our teams, we now welcome primary care doctors, gynecologists, general surgeons, radiologists, orthopedists, pediatric surgeons and nephrologists! Our core mission is still care of the urological patient. Our new name builds on our tradition of quality surgical care, everywhere.

Lupus Foundation of America, The
Phone: 202.349.1155
Website: http://www.lupus.org  
Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

National Association for Continence, The
Phone: 864.377.0900
Toll Free: 800.252.3337
Fax: 864.579.7902
E-Mail: memberservice@nafc.org 
Website: http://www.nafc.org    
NAFC is the largest and most prolific consumer education and advocacy organization dedicated to bladder and bowel health.

National Family Caregiver Association (NFCA)
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
800-896-3650 Toll Free
301-942-6430 Main
301-942-2302 Fax
Website: www.nfcacares.org/contact_us/index.cfm
E-mail: info@thefamilycaregiver.org
The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

National Fibromyalgia Association (NFA)
Corporate Offices
Lynne Matallana, President
2121 S. Towne Centre Place, Suite 300
Anaheim, CA 92806
Phone: (714) 921-0150
Fax: (714) 921-6920
http://www.fmaware.org/
The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.

National Fibromyalgia Partnership (NFP), The
POB 160
Linden, VA 22642
Phone: 866.725.4404
Fax: 540.622.2988
Website: http://www.fmpartnership.org  
Our mission is to make medically-accurate, quality resource information on fibromyalgia (FM) available to our membership, health care professionals, and the community-at-large.  

National Headache Foundation
820 N. Orleans, Suite 217
Chicago, Illinois 60610 
Phone: 888.NHF.5552
Fax: 773.525.7357
Website: http://www.headaches.org
E-mail: info@headaches.org
The National Headache Foundation is a nonprofit organization dedicated to serving headache sufferers, their families and the healthcare practitioners who treat them; promoting research into headache causes and treatments; and educating the public to the fact that headaches are a legitimate biological disease and sufferers should receive understanding and continuity of care.

National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Toll Free: 800.999.6673
Fax: 203.789.2291
Website: http://www.rarediseases.org
 
Mary Dunkle
mdunkle@rarediseases.org
 The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them.

National Vulvodynia Association, The
P. O. Box 4491, Silver Spring, MD 20914-4491
Phone: 301.299.0775
Fax: 301.299.3999
Website: http://www.nva.org
 The National Vulvodynia Association (NVA) is a nonprofit organization created in 1994 to improve the lives of individuals affected by vulvodynia, a spectrum of chronic vulvar pain disorders. In accomplishing this goal, the NVA will:
·         educate affected women about vulvodynia to enable them to make informed choices about their treatment
·         encourage patients to develop self-help strategies to deal with the physical and emotional components of this disorder
·         provide a support network for interested members
·         involve and educate loved ones to promote a more supportive family environment
·         coordinate a centralized source of information on suspected causes, current treatments, and ongoing research for health care practitioners and patients
·         emphasize a coordinated interdisciplinary approach to patients' medical care
·         work cooperatively with other health organizations to improve our understanding of vulvodynia's relationship to other disorders
·         educate the public to bring attention to vulvodynia as a serious women's health concern
·         encourage further research to find more effective treatments and eventual cures for vulvodynia

Patient Advocate Foundation (PAF)
700 Thimble Shoals Blvd, Suite 200
Newport News, VA 23606
800-532-5274
www.patientadvocate.org
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life threatening or debilitating diseases.

P.A.N.D.O.R.A., Inc.  
(Patient Alliance for Neuroendocrineimmune Disorders
Organization for Research & Advocacy)
255 Alhambra Circle, Suite 715
Coral Gables, Florida 33134
954-783-6771
Web site: http://www.pandoranet.info/
We are One Strong Voice for Many©in our neuroendocrineimmune community. We are lending our voice to create awareness of the plight of individuals suffering with neuroendocrineimmune disorders. Our mission is to address and alleviate many of the issues that affect the quality of life of persons who are diagnosed with chronic fatigue syndrome (CFS), (also known as chronic fatigue immune deficiency syndrome (CFIDS) in the U.S., and abroad also known as M.E. or ME; fibromyalgia syndrome (FMS), Gulf War illnesses (GWI), multiple chemical sensitivities (MCS) or environmental

S.L.E. Lupus Foundation
330 Seventh Avenue, Suite 1701, New York, NY 10001
Phone: 212.685.4118
E-Mail: lupus@lupusny.org
Website: http://www.lupusny.org  
The S.L.E. Lupus Foundation is one of the nations leading lupus organizations. It provides patient services, education, public awareness, and funding for lupus research.

Sjogren's Syndrome Foundation
6707 Democracy Blvd #325
Bethesda, MD 20817
Phone: 800.475.6473
Fax: 301.718.0322
Website: http://www.sjogrens.org
   The Foundation's mission is to:
·         Educate patients and their families about Sjögren's syndrome
·         Increase public and professional awareness of Sjögren's syndrome
·         Encourage research into new treatments and a cure

Society for Pudendal Neuralgia (SPuN)
3 Shepherds Lane
North Hampton, New Hampshire  03862
www.spuninfo.org
Jeana.Dill@spuninfo.org
SPuN is a non profit organization established in 2005 to provide accurate clinical information to patients and medical professionals wanting to learn more about the disease Pudendal Neuralgia.  We have gathered information about PN and are in the process of developing a standard of care that we hope to have published and available to practicing medical professionals around the world.

TMJ Association, Ltd., The
(for temporomandibular joint diseases/disorders)
P.O. Box 26770
Milwaukee, WI 53226-0770
Phone: 262.432.0350
Fax: 262.432.0375
E-Mail: info@tmj.org
Website: http://www.tmj.org  
The TMJ Association (TMJA) continues to strive for its ultimate goal: the development of universal standards for safe, effective, affordable, research-based diagnostics, treatments, and prevention of Temporomandibular Joint and Muscle Disorders (TMJDs). We understand that patient education, advocacy, and the provision of accessible support systems are central to achieving that goal.

PAIN SITES

American Chronic Pain Association (ACPA)
PO Box 850
Rocklin, CA 95677
Phone: 1-800-533-3231
E-Mail: ACPA@pacbell.net
Website: http://www.theacpa.org   
To facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain.
To raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.

American Pain Foundation
201 North Charles Street, Suite 710
Baltimore, Maryland 21201-4111
Toll Free: 888.615.7246
E-Mail: info@painfoundation.org 
Website: http://www.painfoundation.org  
The American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.

American Society for Pain Management Nursing
ASPMN National Office
PO Box 15473
Lenexa, KS 66285-5473
888-34ASPMN
913-895-4606
913.895.4652 (fax)
aspmn@goamp.com
The American Society for Pain Management Nursing's mission is to advance and promote optimal nursing care for people affected by pain by promoting best nursing practice. This is accomplished through education, standards, advocacy, and research.

In the Face of Pain®
One Stamford Forum
Stamford, CT 06901-3431
888-726-7535
Email: inthefaceofpain@pharma.com
The In the Face of Pain® advocacy toolkit is a powerful resource created to provide you with a series of tools to advocate for people in pain. You can learn the basics of how to share messages about the rights of people in pain through your community, your local media outlets, your elected officials and your professional organizations.

International Pelvic Pain Society, The
100 E. Woodfield Rd #520
Schaumburg, IL 60173
Phone: 847.517.8712
Fax: 847.517.7229
Website: http://www.pelvicpain.org  
The International Pelvic Pain Society was established in 1996 with two primary objectives:
 
·         To educate health care professionals how to diagnosis and manage chronic pelvic pain, thereby changing the lives of patients worldwide.
 
·         To bring hope to men and women who suffer from chronic pelvic pain by significantly raising public awareness and impacting individual lives.

National Foundation for the Treatment of  Pain, The
Phone: 713.862.9332
Fax: 713.862.9346
Website: http://www.paincare.org
The National Foundation for the Treatment of Pain is a not-for-profit organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them.
 
We are also a resource for medical professionals and attorneys concerned with legal issues regarding the legitimate treatment of pain.

Partners Against Pain
One Stamford Forum
Stamford, CT 06901-3431
888-726-7535
www.partnersagainstpain.com
partnersagainstpain@pharma.com
Partners Against Pain® is a resource that serves patients, caregivers, and healthcare professionals to help alleviate unnecessary suffering by advancing standards of pain care through education and advocacy.

Social Security Administration
Phone: 800.772.1213
www.ssa.gov

Texas Pain Society
P.O. Box 201413
Austin, TX 78720-1413
512-535-0010
866-324-7922
www.texaspain.org
 
Krista R. Crockett, Executive Director
kcrockett@texaspain.org
The Texas Pain Society is a non-profit organization of over 250 pain practitioners that are involved in acute and chronic pain management of patients in Texas. 
 
The Texas Pain Society represents the practice of pain medicine in Texas with a seat on the Texas Medical Association’s House of Delegates. 
 
Our mission is to improve the quality of life of Texans who suffer from pain.

NATIONAL INSTITUTES OF HEALTH SITES
www.niddk.nih.gov/health/urolog/pubs/cystitis/cystitis.htm   

NIDDK IC Booklet
http://www.niddk.nih.gov/health/urolog/pubs/cystitis/cystitis.htm   

National Kidney & Urologic Diseases Clearinghouse
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/index.htm

IC RELATED ASSOCIATIONS OUTSIDE THE USA

Multinational Interstitial Cystitis Association (MICA)
info@multinationalica.org 
www.multinationalica.org
 
ARGENTINA
 
ARACI (Asociación Rosarina de Afectados de CI)
Liliana Bacchi
Telèfono: 0341-4644164
Celular: 0341-156490984

AUSTRIA
 
ICA Österreich e. V.
Attn: Elke Hufnagl
Irisweg 4
A-4623 Gunskirchen
Austria
Phone: 43.7246.8448
Fax: 43.7246.8448
E-Mail: elke.hufnagl@ica-austria.at 
Website: http://www.ica-austria.at 

CANADA
 
Association de la cystite interstitielle (CI) du Québec
Françoise Robert - Présidente
frobert@videotron.ca 
http://www.cystiteinterstitielle.org
 
Ottawa, Ontario, Canada IC support group
Contacts:
Inga Legere
613-839-6188
Anne Raina
613-733-5891
 
GERMANY
 
ICA Deutschland e.V.
Barbara Muendner-Hensen, Chair
Germany
Phone: 49.2251.76729
Website: http://www.ica-ev.de  
 
ITALY
 
Associazione Italiana Cistite Interstiziale
Loredana Nasta
E-Mail: AICI@mclink.it 
Website: http://aici-onlus.it 
 
JAPAN
 
Comfortable Urology Network
Phone: 81.75.3140143
info@hainyo-net.org
www.hainyo-net.org  

Masako Katsurada
Phone: 81.748.338222
perro@mx.biwa.ne.mx.biwa.ne.jp 
www.biwa.ne.jp/~perro
 
THE NETHERLANDS
 
Interstitiele Cystitis Patientenvereniging (ICP)
Attn: Joke Scholten and Lynne van Poelgeest-Pomfret -- Chairs
Phone: 31.30.2962965
E-Mail: info@icpatienten.nl 
Website: http://www.icpatienten.nl
 
International Painful Bladder Foundation
Burgemeester Le Fevre de Monthnylaan 73
Rotterdam 3055
Netherlands
+31 (0) 10 4613330
www.iicpn-foundation.org
Jane M. Meijlink
Chairman
+31 (0) 10 4613330
jane-m@dds.nl

SPAIN
 
A.B.A.T.Y.C.I.
Maria del Rosario Fernandez Garcia, President
Mallorca, Spain
Phone: 34.971.665322
abatycipina@hotmail.com 
http://usuarios.tripod.es/abatyci

Asociación Catalana de Afectados de Cistitis Intersticial (ACACI)
Monica Hernandez, President
E-Mail: asociacionacaci@hotmail.com
http://cistintersticial.webcindario.com
/www.cistitisintersticial.tk 
 
UNITED KINGDOM
 
Bladder Pain Syndrome Association (BPSA)
Phone: 44.1268.555523
E-Mail: info@b-p-s-a.org.uk
Website: http://www.b-p-s-a.org.uk
 
WOMEN'S HEALTH
 
Canadian Women's Health Network
Web: http://www.cwhn.ca  
 
Centres of Excellence for Women's Health
Website: http://www.centres.ca  
 
Society for Women's Health Research
Web: http://www.womenshealthresearch.org
 
Women’s Health Foundation
 
Molly Kirk
Operations Director
632 West Deming Place
Chicago, IL 60614
773-305-8201
773-929-4043 Fax
molly@womenshealthfoundation.org
www.womenshealthfoundation.org
 
Women’s Health American Physical Therapy Association
1111 N Fairfax Street
Alexandria, VA 22314
800-999-2782, Ext 3232
www.womenshealthapta.org
 


Disclaimer Statement:br> All information on the P.U.R.E. H.O.P.E. Web site is provided with the understanding that the P.U.R.E. H.O.P.E. does not engage in the practice of medicine.  The members of P.U.R.E. H.O.P.E. cannot and do not give medical advice.  No information on this Web site should be considered medical advice.  Only your personal physician can do this for you.

LLogo and Web design by Holly Chervnsik of rget="_blank" href="http://www.chervnsik.com">Chervnsik Web Design & Graphics/font>