Liver and Transplant-Related Support Groups

The following liver and transplant-related organizations provide information and support with web sites, newsletters, pamphlets and booklets, parent matching programs, telephone help lines, conferences, meetings and local support groups.

Some of these groups also fund research and offer financial assistance.

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
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
Sandy Brandley, Executive Director
Toll Free: 1-800-521-3025
Phone: (952) 703-9979
Fax: (952) 703-9977
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: 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: 1-888- 655-IRON (4766)
Phone: (407) 829-4488
Fax: (407) 333-1284
"Children Helping 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: 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: (563) 785-6038
Association for Neuro-Metabolic Disorders
5223 Brookfield Lane
Sylvania, OH 43560-1809
Cheryl Volk, Coordinator
Phone: (419) 885-1497
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
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
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
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.
Biliary Atresia Network
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
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.
Canadian Liver Foundation
2235 Sheppard Avenue East, Suite 1500
Toronto, Ontario M2J 5B5
Toll Free: 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
Phone: (301) 962-3520
Fax: (301) 962-3521
Children's Liver Association for Support Services
25379 Wayne Mills Place Suite 143
Valencia, CA 91355
Diane Sumner, President
Toll Free: 1-877-679-8256
Phone: 661-263-9099
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Offers financial aid for families of pediatric liver disease patents. Typical types of financial assistance include a parent's food allowance during their child's hospitalization, telephone service for a child waiting for a transplant, or transportation expenses for a clinic visit.
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
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
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
Phone: (561) 842-9881
Metabolic Information Network
P.O. Box 670847
Dallas, TX 75367-0847
Susan G. Mize, President
Toll Free: 1-800-945-2188
Phone: (214) 696-2188
Fax: (214) 696-3258
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
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
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
Phone: (312) 791-9323
Wilson's Disease Association
869 Kallin Avenue
Long Beach, CA 90815
Toll Free: 1-800-399-0266
Phone: (562) 799-9756 (Evenings)