Advocacy Groups and Organizations
Advocacy groups exist to address the needs of patients and their families, as well as provide information and support. These groups are listed by alphabetical order.
Alagille Syndrome Alliance
Cindy Hahn, President & CEO
10500 SW Starr Drive
Tualatin, OR 97062
(503) 885-0455
email: alagille@alagille.org
web: www.alagille.org
The Alagille Syndrome Alliance is a not-for-profit organization founded in 1993. Its mission is to be the main networking resource and source of information for people with AGS, their families, friends, and health care providers. The Alliance is also dedicated to increasing public awareness of AGS and supporting research efforts on behalf of the AGS community. The Alliance is supporting AGS families, celebrating the AGS community, and building a better life with AGS through education, collaboration, and research.
Alpha-1 Association
(800) 521-3025
web: www.alpha1.org
The Alpha-1 Association is a not-for-profit, membership organization founded in 1991. People who are affected by Alpha-1 govern this international organization. Its mission is "to identify those affected by Alpha-1 Antitrypsin Deficiency and to improve the quality of their lives through support, education, advocacy, and research." That mission is fulfilled through an international network of support groups; a Peer Guide program to help newly diagnosed individuals; and a number of educational materials. The Alpha-1 Association advocates for the community on a host of issues including genetic privacy and discrimination, insurance issues, and product safety and availability. The Association also promotes research and supports the programs of the Alpha-1 Foundation.
The Alpha-1 Association Genetic Counseling Center provides toll-free, confidential genetic counseling to the Alpha-1 community. It is also an expert resource for health care professionals. The Genetic Counseling Center toll-free phone number is 800-785-3177.
AlphaNet
(800) 577-ANET (577-2638)
web: www.alphanet.org
AlphaNet, a not-for-profit disease management company, currently employs more than 20 Alphas. AlphaNet provides a wide range of support services to Bayer Direct subscribers, oversees clinical trials involving Alpha-1 therapies, and is developing a comprehensive disease management program to improve the quality of life for those affected by Alpha-1. Since its start in 1995, AlphaNet has contributed over $4 million to support Alpha-1 Antitrypsin Deficiency and Alpha-1 Community programs.
Alpha-One Foundation
John W. Walsh
2937 SW 27th Ave
Miami, FL, 33133
(305) 567-9888
email: jwwalsh@alphaone.org
web: www.alphaone.org
American Liver Foundation
(800) GO LIVER (465-4837)
web: www.liverfoundation.org
The American Liver Foundation is a national, voluntary not-for-profit organization. It has been dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education and advocacy since 1976.
American Lung Association
(800) LUNG-USA (586-4872)
web: www.lungusa.org
The American Lung Association (ALA) is a nationwide health organization. Since 1904, the American Lung Association has been fighting lung disease through education, comunity service, advocacy and research, and through seeking better treatments and cures. The ALA can also help you find information on smoking cessation programs.
Biliary Atresia Research Consortium (BARC)
The Biliary Atresia Research Consortium (BARC) is a group of doctors, nurses, research coordinators and medical facilities in the U.S. working together to study infants with cholestasis (blockage of bile flow from the liver). Poor bile flow and buildup of substances in the liver can cause serious illness and lead to liver injury.
web: www.barcnetwork.org
Children's Liver Association for Support Services (CLASS)
Diane Sumner, President
26444 Emerald Dove Drive
Valencia, CA 91355
(877) 679-8256
email: SupportSrv@aol.com
web: www.classkids.org
Children's Liver Disease Foundation
Catherine Arkley - Chief Executive
36 Great Charles Street
Birmingham
B3 3JY
United Kingdom
+44 (0) 121 212 3839
+44 (0) 121 212 4300
email: info@childliverdisease.org
web: www.childliverdisease.org
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
(301) 435-2988
web: www.niddk.nih.gov
The National Institute of Diabetes and Digestive and Kidney Diseases conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines.
National Organization for Rare Disorders (NORD)
(203) 744-0100
(800) 999-6673 (voicemail only)
web: www.rarediseases.org
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Office of Rare Diseases (ORD)
(301) 402-4336
web: rarediseases.info.nih.gov
This Web site provides information about ORD-sponsored biomedical research, scientific conferences, rare and genetic diseases in English and Spanish (Genetic and Rare Diseases Information Center), and a portal to information on major topics of interest in the rare diseases community. If you cannot locate on this Web site the specific information you seek, please call (301) 402-4336 or email ord@od.nih.gov
United Mitochondrial Disease Foundation
(412) 793-8077
(412) 793-6477
web: www.umdf.org
The UMDF mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families. UMDF supports scientific collaboration and family networking through international symposia and is building an endowment to sustain research through the millennium.
borc-admin@umich.edu