| DIRECTORY
OF DIGESTIVE DISEASES:
This directory lists voluntary and private organizations
involved in digestive-diseases-related activities for patients.
The organizations offer educational materials and other
services. |
|
Organizations
for Patients
|
|
Organization
|
Mission
|
Alagille
Syndrome Alliance
(503) 639-6217
http://www.alagille.org |
Provides
a support network for children, their parents, and others with
Alagille syndrome. |
American
Celiac Society - Dietary Support Coalition
(504) 737-3293
Email:
amerceliacsoc@onebox.com |
Provides
practical assistance to members and individuals with Celiac
disease and information about the disease to the public. |
American Dietetic
Association (ADA)
(800)
366-1655 or (312) 899-0040
http://www.eatright.org |
Provides
consumers with direct and immediate access to reliable nutrition
information. Callers may speak to a registered dietitian, may
listen to regularly updated nutrition messages in English or
Spanish, or may be referred to a dietitian in their local area. |
American
Hemochromatosis Society Inc. (AHS)
(888) 655-4766
http://www.americanhs.org |
Educates
the public, the medical community, and the media by distributing
the most current information available on hereditary
hemochromatosis (HH), including DNA screening for HH and
pediatric HH; also facilitates enforcement through an online
network |
American
Liver Foundation (ALF)
(800)
465-4837 or (888) 443-7222
http://www.liverfoundation.org |
Promotes
awareness and supports research on liver disease; disseminates
information about liver wellness, liver disease, and prevention
of liver disease with audiovisual and printed materials,
seminars, and training programs; promotes organ donation;
encourages vaccination against hepatitis B; serves as trustee of
transplant funds; and offers support through local chapters. |
American
Porphyria Foundation
(713)
266-9617
http://www.porphyriafoundation.com |
Advances
awareness, research, and treatment of the porphyrias; provides
self-help services for members; and provides referrals to
porphyria treatment specialists. |
Association of Gastrointestinal
Motility Disorders, Inc.
(781) 861-3874
http://www.agmd-gimotility.org |
Promotes
public awareness of gastrointestinal motility disorders, in
particular intestinal pseudo-obstruction and Hirschsprung's
disease; provides education and support to individuals and
families of children who have been diagnosed with these
disorders through person-to-person contact, publications, and
educational symposia; and encourages and supports medical
research in the area of gastrointestinal motility disorders. |
| |
|
Celiac
Disease Foundation (CDF)
(818)
990-2354
http://www.celiac.org |
Provides
services and support to people with celiac disease and
dermatitis herpetiformis, through programs of awareness,
education, advocacy, and research; telephone information and
referral services; medical advisory board; and special
educational seminars and quarterly meetings. |
Celiac
Sprue Association/USA Inc.
(402)
558-0600
http://www.csaceliacs.org |
Provides
information and referral services for persons with celiac sprue
and dermatitis herpetiformis and parents of celiac children.
Made up of six regions in the United States with 42 chapters and
78 resource units. |
Crohn's
and Colitis Foundation of
America Inc.
(800)
932-2423 or (212) 685-3440
http://www.ccfa.org |
Supports
basic and clinical research on a cure and treatment for Crohn's
disease and ulcerative colitis; conducts professional education
activities; produces public service programs and a wide variety
of literature about inflammatory bowel disease for patients and
their families, professionals, and the public; and sponsors 70
chapters and affiliates. |
Cyclic
Vomiting Syndrome Association (CVSA)
(614) 837-2586
http://www.cvsaonline.org |
Provides
opportunities for patients, families, and professionals to offer
and receive support and share knowledge about cyclic vomiting
syndrome; actively promotes and facilitates medical research;
increases worldwide public and professional awareness; and
serves as a resource center for information. |
Digestive
Disease National Coalition
(202)
544-7497 |
Informs
the public and the health care community about digestive
diseases; seeks Federal funding for research, education, and
training; and represents members' interests regarding Federal
and State legislation that affects digestive diseases research,
health care, and education. |
Food
Allergy & Anaphylaxis Network
(703)
691-3179
http://www.foodallergy.org/ |
Increases
public awareness about food allergies and anaphylaxis and helps
families living with food allergies. Provides education,
emotional support, and coping strategies to patients, and serves
as the communication link between the food industry, the
Government, the airline industry, and the food-allergic
consumer. |
Gastro-Intestinal
Research Foundation
(312)
332-1350
http://www.girf.org |
Supports
research and training programs at the University of Chicago
Medical Center, Section of Gastroenterology; sponsors
educational activities for the public. |
The
GERD Information Resource Center
http://www.gerd.com |
This
site contains information about gastrointestinal reflux disease
(indigestion, heartburn). It is supported by Astra
Pharmaceuticals LP which sells a drug used in treating GERD. |
The
Gluten Free Page
http://www.panix.com/~donwiss/ |
This
site provides links to many celiac disease/gluten intolerance
web sites. |
Gluten
Intolerance Group of North
America
(206) 246-6652
http://www.gluten.net
|
Provides
instructional and general information materials, counseling, and
access to gluten-free products and ingredients to persons with
celiac sprue and their families; operates telephone information
and referral service; conducts educational seminars for health
professionals; conducts and supports research; and offers
leadership and assistance to 14 affiliates and local member
contacts. |
Hepatitis
B Coalition
(651)
647-9009
http://www.immunize.org/ |
Works
to prevent transmission of hepatitis B in high-risk groups; to
achieve vaccination of all infants, children, and adolescents;
and to promote education and treatment for the hepatitis B
carrier. |
Hepatitis
B Foundation
(215) 489-4900
http://www.hepb.org |
Provides
support and education to people affected by hepatitis B and
dedicates itself to eliminating hepatitis B through community
education and cure research programs. |
Hepatitis
Foundation International (HFI)
(301)
622-4200 or (800) 891-0707
http://www.hepfi.org |
Fosters
worldwide awareness about the prevention, diagnosis, and
treatment of viral hepatitis; provides patient and professional
education programs; distributes publications; and supports
research. A unique service is the Patient Advocacy/Information
Telecommunications System, a phone support network that enables
patients to talk to others with similar concerns. |
International
Foundation for Functional
Gastrointestinal
Disorders (IFFGD)
(414)
964-1799 or (888) 964-2001
http://www.iffgd.org |
Provides
support and educational information for people affected by
functional gastrointestinal disorders, including irritable bowel
syndrome (IBS), constipation, diarrhea, pain, and incontinence. |
Intestinal
Disease Foundation Inc.
(877) 587-9606 or
(412)
261-5888
http://www.intestinalfoundation.org |
Provides
one-on-one telephone support, educational programs and
materials, and self-help groups for people with irritable bowel
syndrome (IBS) and inflammatory bowel diseases, primarily in the
Pennsylvania-Ohio-West Virginia area; sponsors medical seminars
and educational meetings; and provides a speakers' bureau,
research updates, and physician referral lists. |
Iron Disorders Institute
(888) 565-IRON or (864) 292-1175
http://www.irondisorders.org |
Mission is to reduce pain, suffering,
and unnecessary death due to disorders of iron through awareness,
education, and research |
Iron
Overload Diseases Association Inc.
(561)
840-8512
http://www.ironoverload.org
|
Conducts
professional education symposiums and exhibits at medical
meetings; serves and counsels hemochromatosis patients and
families; offers doctor referrals; promotes patient advocacy
concerning insurance, Medicare, blood banks, and the Food and
Drug Administration; encourages research; maintains
international consortium; offers public information through the
media; develops chapters and self-help groups; and sponsors
annual symposiums and annual IOD Awareness Week. |
National
Association For Continence (NAFC)
(800)
BLADDER or (843) 377-0900
http://www.nafc.org/ |
A
leading source of education, advocacy, and support to the public
and to the health profession about the causes, prevention,
diagnosis, treatments, and management alternatives for
incontinence. |
National
Foundation for Celiac Awareness
(215) 325-1306
http://www.celiacawareness.org |
Raises awareness and funding
for celiac disease that will advance research, education, and
screening, and improve the quality of life of children and adults
affected by this autoimmune disease through grant making and
direct programming |
National
Organization for Rare Disorders
Inc. (NORD®)
(800)
999-6673 or (203) 744-0100
http://www.rarediseases,org |
Serves
as a clearinghouse for information about rare disorders and
brings together families with similar disorders for mutual
support; fosters communication among rare disease voluntary
agencies, government agencies, industry, scientific researchers,
academic institutions, and concerned individuals; and encourages
and promotes research and education on rare disorders and orphan
drugs. |
The
No Milk Page
http://www.panix.com/~nomilk/ |
This
site provides links to many lactose intolerance web sites. |
The
Oley Foundation Inc.
(800)
776-OLEY or (518) 262-5079
http://www.oley.org |
Promotes
and advocates education and research in home parenteral and
enteral nutrition; provides support and networking to patients
through information clearinghouse and regional volunteer
networks; sponsors meetings and conferences, including annual
patient/clinician conference; maintains speakers' bureau;
manages the North American Home Parenteral and Enteral Nutrition
Patient Registry (formerly known as OASIS), a voluntary database
of patient-outcome information from across the United States and
Canada; and publishes annual summaries of results and basic
statistics. |
Pediatric/Adolescent
Gastroesophageal
Reflux
Association Inc. (PAGER)
(301)
601-9541
http://www.reflux.org/ |
Gathers
and disseminates information on pediatric gastroesophageal
reflux and related disorders; provides support and education to
patients, their families, and the public; promotes the general
welfare of patients with gastroesophageal reflux and their
families; and promotes public awareness of the condition. |
Pull-thru
Network
(205) 428-5953
http://www.pullthrough.org |
Provides
emotional support and information to patients and families of
children who have had or will have pull-through surgery to
correct an imperforate anus or associated malformation,
Hirschsprung's disease, or other fecal incontinence problems.
Sponsors online discussion groups. A chapter of the United
Ostomy Association. |
Reach
Out for Youth with Ileitis
and Colitis Inc.
(631) 293-3102
http://www.reachoutforyouth.org |
Provides
educational seminars and individual and group support to
patients and their families. Sponsor of the Center for Pediatric
Ileitis and Colitis at North Shore University Hospital--Cornell
University Medical College. Fundraising efforts support the
Center's programs, clinical and laboratory research, and
purchase of state-of-the-art equipment. |
The
Simon Foundation for Continence
(800)
23-SIMON or (847) 864-3913
http://www.simonfoundation.org |
Seeks
to bring the topic of incontinence out of the closet and remove
the associated stigma. Provides educational materials to
patients, their families, and the health care professionals who
provide patient care. |
TEF-VATER
International
(301) 952-6837
http://www.tefvater.org
|
Provides
support to children and adults born with tracheoesophageal
fistula (TEF), esophageal atresia, or VATER (V--vertebral
defects, A--imperforate anus, TE--tracheoesophageal defects,
R--radial and renal dysplasia). |
United
Ostomy Association Inc. (UOA)
(800)
826-0826 or (949) 660-8624
http://www.uoa.org/ |
Produces
and distributes materials about ostomy care and management;
through trained UOA members, offers practical assistance and
emotional support to ostomy patients; sponsors annual youth
rally and State and regional conferences for local affiliates;
and 650 chapters serve people locally. |
Weight-control
Information Network (WIN)
(202) 828-1025 or (877) 946-4627
http://www.niddk.nih.gov/health/nutrit/win.htm |
To
address the health information needs of individuals through the
production and dissemination of educational materials. In
addition, WIN is developing communication strategies for a pilot
program to encourage at-risk individuals to achieve and maintain
a healthy weight by making changes in their lifestyle. |
Wilson's
Disease Association
(800)
399-0266 or (330) 264-1450
http://www.wilsonsdisease.org |
Serves
as a communications and support network for individuals affected
by Wilson's disease and related disorders of copper metabolism;
distributes information to professionals and the public. |
|
Government
Sites |
Healthfinder
http://www.healthfinder.org |
This
is a consumer health and human services information web site
from the United States government. It contains online
publications and information about clearing houses, databases,
web sites, and support and self-health groups dealing with a
variety of health related issues. |
National
Digestive Diseases
Information
Clearinghouse
(301)
654-3810
http://www.niddk.nih.gov/health/digest/nddic.htm |
The
National Digestive Diseases Information Clearinghouse (NDDIC) 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 under the U.S. Public Health Service.
Established in 1980, the clearinghouse provides information
about digestive diseases to people with digestive disorders and
to their families, health care professionals, and the public.
NDDIC answers inquiries; develops, reviews, and distributes
publications; and works closely with professional and patient
organizations and Government agencies to coordinate resources
about digestive diseases. |
|
Professional
Organizations |
American
College of Gastroenterology
http://www.asg.gi.org/
Click on "Digest This!" |
These
organizations primarily serve healthcare providers such as
physicians and nurses. However, within each there is usually a
section for the public, the consumer, and/or the patient. |
American
Society for Gastrointestinal Endoscopy
http://www.asge.org
Click on "Patient Information" |
American
Gastroenterological Association
http://www.gastro.org
Click on "Digestive Health information of interest to the
public" |
American
Association for the Study of Liver Disease
http://www.aasld.org
Click on "Links of Interest" |
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