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)
