Alagille Syndrome Alliance
10630 SW Garden Park Place
Tigard, OR  97223
Cindy L. Hahn, Director
Phone: (503) 639-6217

Alliance of Genetic Support Groups
4301 Connecticut Avenue, NW
Suite 404
Washington, DC  2008
Toll-free: 1-800-336-4363 
Local phone: (202) 966-5557
Fax: (202) 966-8553
Resource for consumers and professionals who are looking for genetic support groups and genetic services.

Alpha-1 Association
8120 Penn Avenue South
Suite 549
Minneapolis, MN 55431-1326
Toll-free: 1-800-521-3025
Local phone: (952) 703-9979
Fax number: (952) 703-9977
Sandy Brandley, Executive Director
Support, education, and research efforts for people affected by Alpha1-antitrypsin deficiency (A1AD).

Alpha 1 Foundation
2937 SW 27th Avenue, Suite 302
Miami, Florida 33133
Toll Free number: 1-877-228-7321
Phone: ( 305) 567-9888
Fax: (305) 567-1317
Serves people whose lives are impacted by a diagnosis of Alpha 1-antitrypsin deficiency.

American Cancer Society
1599 Clifton Road
Atlanta, Georgia 30329
Toll-free: 1-800-ACS-2345

American Hemochromatosis Society
PMB 416
4044 W. Lake Mary Road, Unit #104
Lake Mary, FL 32746
Toll-free number: 1-888- 655-IRON (4766)
Phone: (407) 829-4488
Fax: (407) 333-1284
"Children HHelping Children" screening project identifies children with iron overload/pediatric hereditary hemochromatosis through biochemical and DNA testing.

American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038
Toll-free number: 1-800-GO LIVER
Research, education and support groups.
Biliary Atresia Fund for the Cure.

Association for Glycogen Storage Disease
P.O. Box 896
Durant, IA  52747-9769
Hollie L. Swain, President
Phone: (563) 785-6038
Fax: same

Association for Neuro-Metabolic Disorders
5223 Brookfield Lane
Sylvania, OH  43560-1809
Cheryl Volk, Coordinator
Phone: (419) 885-1497
E-mail: VOLK4OLKS@aol.com
Support group for families with children who have metabolic disorders.

Autosomal Recessive Polycystic Kidney Disease/Congenital Hepatic Fibrosis
P.O. Box 70
Kirkwood, PA  17536
Colleen Zak, Coordinator
Phone: (717) 529-5555

Biliary Atresia Bereavement Group

Online email support group for loved ones who have lost a child due to biliary atresia, before or after transplant.  For more information on this group, please email Laurie Johansen, Founder at BradnAshley@yahoo.com

Biliary Atresia Network

Online email support group for families who are dealing with the pediatric liver disease, biliary atresia pre or post transplant. Members will share stories, seek support, ask questions, pray together or just talk. This group is open to all families, friends and medical professionals who care for children with biliary atresia. Please join us!  To join this group, please email Laurie Johansen, Founder at BradnAshley@yahoo.com.

Canadian Liver Foundation
2235 Sheppard Avenue East, Suite 1500
Toronto, Ontario  M2J 5B5
Toll-free number: 1-800-563-5483
Phone: (416) 491-3353
Fax: (416) 491-4952

Candlelighters Childhood Cancer Foundation
P.O. Box 498
Kensington, MD 20895
Toll-free: 1-800-366-2223
Local phone: (301) 962-3520
Fax: (301) 962-3521

Children's Liver Association for Support  Services
27023 McBean Parkway #126
Valencia, CA  91355
Diane Sumner, President
Toll-free: 1-877-679-8256
Local phone/fax: (661) 263-9099
Support services for children, families, and caregivers coping with pediatric liver disease and liver transplantation.

Children's Liver Disease Foundation
AXA Equity & Law House
35-37 Great Charles Street Queensway
Birmingham, B3 3JY
United Kingdom
Phone: 0121 212 3839
Fax: 0121 212 4300

Crigler-Najjar Syndrome Web
Web site devoted to children and adults with Crigler-Najjar syndrome and their families.

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD  20814
Robert J. Beall, PhD, President-CEO
Toll-free: 1-800-344-4823
Local phone: (301) 951-4422
Fax: (301) 951-6378

Hemochromatosis Foundation, Inc.
P.O. Box 8569
Albany, NY  12208
Margit A. Krikker, MD, Director
Phone: (518) 489-0972
Fax: (518) 489-0227

Hepatitis B Foundation
700 East Butler Avenue
Doylestown, PA 18901
Phone: (215) 489-4900

Hepatitis Foundation International
504 Blick Drive
Silver Springs, MD 20904
Thelma King Thiel, Chairman-CEO
Toll-free: 1-800-891-0707
Local phone: (301) 622-4200
Fax: (301) 662-4702

Iron Overload Diseases Association, Inc.
433 Westwind Drive
North Palm Beach, FL  33408-5123
Roberta Crawford, President
Phone: (561) 840-8512
Fax: (561) 842-9881

Metabolic Information Network
P.O. Box 670847
Dallas, TX  75367-0847
Susan G. Mize, President
Toll-free: 1-800-945-2188
Local phone: (214) 696-2188
Fax: (214) 696-3258
E-mail: mizesg@1x.netcom.com

National Childhood Cancer Foundation
440 E. Huntington Drive
P.O. Box 60012
Arcadia, CA  91066-6012
Toll-free: 1-800-458-6223
Fax: (626) 447-6359

National Organization for Rare Disorders, Inc.
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813
Toll-free: 1-800-999-6673
Fax: (203) 798-2291
Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

National Reye's Syndrome Foundation
426 North Lewis
P.O. Box 829
Bryan, OH 43506
Toll-free: 1-800-233-7393
Local phone: (419) 636-2679
Fax: (419) 636-9897

National Urea Cycle Disorders Foundation
4841 Hill Street
La Canada, CA 91011
Toll-free: 1-800-386-8233

Parents of Galactosemic Children, Inc.
885 Del Sol Street
Sparks, NV 89436
Evelyn Rice, President
Phone: (775) 626-0885

Parents of Kids with Infectious Diseases
P.O. Box 5666
Vancouver, WA 98668
Toll-free: 1-877-55-PKIDS
Information and support for families of the children living with hepatitis, HIV/AIDS, or other chronic, viral infectious diseases.

PKD Foundation
4901 Main Street, Suite 200
Kansas City, MO 64112
Toll-free: 1-800-PKD-CURE
Fax: 816-931-8655
Devoted to determining the cause, improving clinical treatment and discovering a cure for Polycystic Kidney Disease. Support groups, resources and information about Autosomal Recessive PKD and congential hepatic fibrosis.

UCD (Urea Cycle Disorders) Support Network
P.O. Box 6924
Chicago, IL  60680-6924
Toll-free: 1-800-309-8237
Local phone: (312) 791-9323