1998-1999
Patient and Professional Information Compendium
This page contains names and addresses of organizations prepared to answer questions
and supply information about the following gastrointestinal conditions. It is also
provided in Adobe PDF format for easy downloading. That
document requires the free Acrobat Reader which can be downloaded here.
Anorectal Malformations
Celiac Disease
Cyclic Vomiting
Cystic Fibrosis
Eating Disorders
Esophageal Atresia-TEF-VATER Syndrome
Familial Polyposis Syndromes
Food Allergy
General Information
Inflammatory Bowel Disease
Liver Disease
Metabolic Disorders
Motility Disorders
Ostomies
Rare Diseases
Reye's Syndrome
Shwachman Syndrome
TPN and Enteral Nutrition
Pull-Through Network
4 Woody Lane
Westport, CN 06880
203 221 8483
pullthrunw@aol.com
Canadian Celiac Association
190 Britannia Rd. East
Mississauga, ON CAN L4Z 1W6
905 507 6203
905 507 4673 FAX
Celiac Disease Foundation
13251 Ventura Blvd. Suite 1
Studio City, CA 91604
818 990 2354 ext 1838
818 990 2379 FAX
http://www.venturablvd.com/studio_city/SDC82787.html
Celiac Sprue Association/USA
PO Box 31700
Omaha, NE 68131
402 558 0600
402 558 1347 FAX
Gluten Intolerance Group of North America
PO Box 23053
Seattle, WA 98102
206 325 6980
Cyclic Vomiting Syndrome Association
13180 Caroline Court
Elm Grove, WI 53122
414 748 6842
414 821 5494 FAX
kadams@post.its.mcw.edu
http://www.beaker.iupui.edu/cvsa
Canadian Cystic Fibrosis Foundation
2221 Younge Street Suite 601
Toronto, ON M2S 2B4
CANADA
416 485 9149
416 485 0960 FAX
http://www.ccff.ca/~cfwww/index.html
Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
800 344 4823
301 951 4422
301 951 6378 FAX
http://www.cff.org
American Anorexia/Bulemia Association
165 West 46th Street, Suite 1108
New York, NY 10036
212 575-6200
National Association of Anorexia Nervosa and Associated Disorders
PO Box 7
Highland Park, IL 60035
847 831 3438
http://www.members.aol.com/anad20/index/html
Prader Willi Association (USA)
5700 Midnight Pass Rd.
Sarasota, FL 34242
800 926 4797
http://www.pwsa/usa.org
Esophageal Atresia-TEF-VATER Syndrome
TEF/VATER International Support Network
15301 Grey Fox Road
Upper Marlboro, MD 20722
301 952 6837
EA/TEF Child and Family Support Connection
111 West Jackson Boulevard, Suite 1145
Chicago, IL 60604
312 987 9085
312 987 9086 FAX
eatef2@aol.com
http://www.eatef.org
Familial Polyposis Syndromes
Familial Polyposis Registry
Dept. Colorectal Surgery
Cleveland Clinic Foundation
9500 Euclid Ave.
Cleveland, OH 44195
216 444 6470
Food Allergy Network
10400 Eaton Place, Suite 107
Fairfax, VA 22030-2208
703 691 3179
703 691 2731 FAX
fan@worldweb.net
http://www.foodallergy.org/
National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD 20892
301 654 3810
http://www.NIDDK.nih.gov
Crohn's and Colitis Foundation of America
386 Park Ave. So. 17th Floor
New York, NY 10016
212 685 3440
800 932 2423
212 779 4098 FAX
info@ccfa.org
http://www.ccfa.org
Crohn's and Colitis Foundation of Canada
21 St. Clair Ave East, Suite 301
Toronto, ON CAN M4T 1L9
416 920 5035
416 929 0364 FAX
ccfc@netcom.ca
http://www.ccfc.ca
Pediatric Crohn's and Colitis Association, Inc.
PCCA, Box 188
Newton, MA 02468
617 489 5854
617 290 0902 voice/FAX
pcca_inc@yahoo.com
http://pcca.hypermart.net
Reach Out for Youth with Ileitis and Colitis
15 Chemung Place
Jericho, NY 11753
516 822 8010
516 822 8885 FAX
spell16@ix.netcom
Alagille Syndrome Alliance
10630 SW Garden Park Place
Tigard, OR 97223
503 639 6217
cchahn@worldnet.att.net
http://www.athenet.net/~luxhoj/alagillesyndrome.ht
Alpha-1 Liver Disease Family Network
8120 Pen Ave. So. #549
Minneapolis, MN 55431
612 703 9979
612 885 0133 FAX
deanesc@3rddoor.com
http://www.alphalink.org/alpha-liver.htm
American Liver Foundation
1425 Pompton Ave.
Cedar Grove, NJ 07009
800 GO LIVER
973 256 3214 FAX
info@liverfoundation.org
http://www.liverfoundation.org
American Porphyria Foundation
PO Box 22712
Houston, TX 77227
713 266 9617
http://www.enterprise.net/apf/index.html
Canadian Liver Foundation
365 Bloor Street E. Suite 200
Toronto, ON CAN M4W 3L4
416 964 1953
416 964 0024 FAX
clf@liver.ca
http://www.liver.ca
Children’s Liver Alliance
3835 Richmond Avenue, Box 190
Staten Island, NY 10312
718 987 6200 voice/FAX
Livers4Kids@earthlink.net
http://livertx.org
CLASS (Children's Liver Association for Support Services)
26444 Emerald Dove Drive
Valencia, CA 91355
805 255 0353
SupportSrv@aol.com
http://www.transweb.org/class
Hemochromatosis Research Foundation
PO Box 8569
Delmar, NY 12208
518 475 2875
Hepatitis International Foundation
30 Sunrise Terrace
Cedar Grove, NJ 07009
973 239 1035
973 239 5044 FAX
mail@hepfi.org
http://www.hepfi.org
Iron Overload Diseases Association
433 Westwind Drive
North Palm Beach, FL 33408
561 840 8512
http://www.ironoverload.org
National Center for the Study of Wilson's Disease
432 W. 58th Street, Suite 614
New York, NY 10019
212 523 8717
212 523 8708 FAX
http://medhlp.netusa.net/agsg/agsg275.htm
PKIDs
PO Box 5666
Vancouver, WA 98668
360-695-0293
360-695-6941 fax
877-55-PKIDS (toll free)
http://www.pkids.org
pkids@pkids.org
Wilson’s Disease Association
4 Navahoe Drive
Brookfield, CT 06804
800 399 0266
http://www.wilsonsdisease.org
Association for Glycogen Storage Disease
Box 896
Durant, IA 52747
319 785 6038 voice/FAX
FOD (Fatty Acid Oxidation Disorders) Family Support Group
805 Montrose Drive
Greensboro, NC 27410
336 547 8682
goulddan@aol.com
American Pediatric Pseudo obstruction and Hirschprung’s Society Inc.
158 Pleasent Street
N. Andover, MA 01845
978 685 4477
978 685 4488 FAX
aphs@tiac.net
http://www.tiac.net/users/aphs
Pediatric / Adolescent Gastroesophageal Reflux Association
PO Box 1153
Germantown, MD 20875-1153
301 601 9541
GERGROUP@aol.com
http://207.233.129.103/
Children’s Motility Disorder Foundation, Inc.
225 Peachtree Street N.E., St 1430
Atlanta, GA 30303
800 809 9492
404 395 1050 FAX
cmdf@motility.org
http://www.motility.org
United Ostomy Association
19772 MacArthur Blvd. #200
Irvine, CA 92612
800 826 0826
949 660 8624
UOA@deltanet.com
http://www.uoa.org
United Ostomy Association of Canada
PO Box 46057,College Park Post Ofc
444 Yonge Street
Toronto, ON CAN M5B 2L8
416 595 5452
416 595 9924 FAX
Rare Diseases
Carbohydrate Deficient Glycoprotein Syndrome (CDGS)
Family Network Inc.
4 Wryan Road
Derry, NH 03038
603 434 8822
cdgforum@ultranet.com
http://www.cdgs.com
Hermansky-Pudlak Syndrome
(HPS) Network
1 South Road
Oyster Bay, NY 11771-1905
800 789 9HPS
516 922 4022 FAX
appell@worldnet.att.net
http://www.medhelp.org.web.hpsn.htm
National Organization for Rare Disorders (NORD)
PO Box 8923
New Fairfield, CT 06812
800 999 6673
203 746 6518
orphan@rarediseases.org
http://www.rarediseases.org
Reye's Syndrome
National Reye Syndrome Foundation
PO Box 829
Bryan, OH 43506
800 233 7393
419 636 2679
http://ericps.ed.uiuc.edu/npin/reswork/workorgs/reyesynd.html
Shwachman Syndrome Support, Int’l.
4118 Quincy Street
St. Louis, MO 63116
314 352 1821
4sskids@mvp.net
http://www.schwachman-supprot.org
TPN and Enteral Nutrition
American Society of Parenteral and Enteral Nutrition
8630 Fenton Street, #412
Silver Springs, MD 20910
301 587 6315
aspen@nutr.org
http://www.clinnutr.org
Oley Foundation
214 Hun Memorial
A-23 Albany Medical Center
Albany, NY 12208
800 776 OLEY
518 262 5079
518 262 5528 FAX
http://www.wizvax.net/oleyfdn
This information was collected by members of the patient care committee of the North
American Society for Pediatric Gastroenterology and Nutrition (NASPGN) as a service to
professionals and their patients. This listing is correct to the best of our knowledge at
the time of printing, but names, addresses and phone numbers of organizations may change.
If corrections and additions are needed, please inform us so that we may update and
maintain this service.
Please send information to: Dr. Robert Cannon / Kaiser Foundation Medical Center / 2025
Morse Ave / Sacramento, CA 95825 / FAX: 916 973 7338 / email: robert.cannon@ncal.kaiperm.org |
