Jeffrey S. Crespin
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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 | Government Sites | Professional Organizations

Organizations for Patients

Alagille Syndrome Alliance
(503) 639-6217http://www.alagille.org Provides a support network for children, their parents, and others with Alagille syndrome.

American Celiac Society - Dietary Support Coalition
(504) 737-3293Email:  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.

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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.

 

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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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Copyright © 2013 Jeffery S. Crespin, MD, Specializing in Gastroenterology and Hepatology – All Rights Reserved.