PATIENT SUPPORT GROUPS
Patient support 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
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 ALGS, their families, friends, and
health care providers. The Alliance is also dedicated to increasing public
awareness of ALGS and supporting research efforts on behalf of the ALGS
community. The Alliance is supporting ALGS families, celebrating the ALGS
community, and building a better life with ALGS through education, collaboration,
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.
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(800) 577-ANET (577-2638)
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.
John Walsh, President & CEO
2937 SW 27th Ave
Miami, FL, 33133
The Alpha-1 Foundation is a not-for-profit organization which has invested nearly $39 million to support Alpha-1 research at more than 70 institutions in North America, Europe and Australia. The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency.
American Liver Foundation
(800) GO LIVER (465-4837)
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.
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American Lung Association
(800) LUNG-USA (586-4872)
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.
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Canadian Cystic Fibrosis Foundation
Children's Liver Association for Support Services
Diane Sumner, President
26444 Emerald Dove Drive
Valencia, CA 91355
Children's Liver Disease Foundation
Catherine Arkley - Chief Executive
36 Great Charles Street
+44 (0) 121 212 3839
+44 (0) 121 212 4300
Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is a nonprofit donor-supported organization,
focusing on the development of the means to cure and control cystic fibrosis
and to improve the quality of life for those with the disease. The Foundation
is the leading organization in the United States devoted to cystic fibrosis.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
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.
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National Organization for Rare Disorders (NORD)
(800) 999-6673 (voicemail only)
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)
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 firstname.lastname@example.org
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Progressive Familial Intrahepatic Cholestasis (PFIC)
PFIC.org is a website that was built by and for PFIC patients and
families. It was extablished to provide a resource for those with new
diagnoses and for those continuing to search for treatments and solutions
to the challenges of PFIC. Our mission is to improve the lives of patients
and families worldwide affected by Progressive Familial Intrahepatic Cholestasis,
PFIC. We support research programs, provide educational materials, match
families for peer support, and participate in advocacy opportunities.
United Mitochondrial Disease Foundation
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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