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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
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