Advocacy Groups and Organizations

Available for Download: CLiC Patient Contact Registry Brochure [.pdf]

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, Director
10500 SW Starr Drive
Tualatin, OR 97062
503-885-0455
alagille@earthlink.net
Web site: www.alagille.org
The Alagille Syndrome Alliance is dedicated to education and support for patients and families with Alagille syndrome. The Alliance has also organized 3 international AGS family symposia, and numerous regional events. There is a detailed website with information.

Alpha-1 Association
Toll Free: 800-521-3025
Web Site: 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
Toll Free: 800-577-ANET (577-2638)
Web Site: 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
jwwalsh@alphaone.org
Web Site: www.alphaone.org

American Liver Foundation
Toll Free: 800-GO LIVER (465-4837)
Web Site: 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
Toll Free: 800-LUNG-USA (586-4872)
Web Site: 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
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
Tel: +44 (0) 121 212 3839
Fax: +44 (0) 121 212 4300
E-Mail: info@childliverdisease.org
Web site: www.childliverdisease.org

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Phone: (301) 435-2988
Web Site: 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)
Phone Number: (203) 744-0100
Tollfree: (800) 999-6673 (voicemail only)
Web site: 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)
Phone: (301) 402-4336
Website: 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
Phone: (412) 793-8077
FAX: (412) 793-6477
Web site: 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.

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