AlphaNet Makes “Big Fat Reference Guide” Available on New Website

FOR IMMEDIATE RELEASE

Contact:
Bonnie S. Boyd, RN
AlphaNet, Inc.
(561) 969-9454

Coconut Grove, Florida, May 13, 2005 – AlphaNet, Inc., a not-for-profit organization founded to improve the health of individuals with Alpha-1 Antitrypsin Deficiency (Alpha-1), today announced the inclusion of its publication “Big Fat Reference Guide” (BFRG) on its newly redesigned website.

The BFRG, authored by 32 contributors from a wide spectrum of health care professions and persons diagnosed with Alpha-1, is considered the most comprehensive reference guide to living with Alpha-1 available anywhere. Targeted for use by persons diagnosed with Alpha-1, their families, and their health care professionals, the BFRG was developed as the cornerstone of AlphaNet’s comprehensive disease management and prevention program. Prior to its inclusion on the website, the BFRG had only limited availability. According to Bonnie Boyd, RN, AlphaNet’s Director of Disease Management and editor of the BFRG, “This is very exciting because it has always been our goal to provide the most comprehensive information about Alpha-1 to the greatest number of people. Using the AlphaNet website as the technology to accomplish that goal only made sense.”

Dr. Robert A. Sandhaus, Executive Vice President and Medical Director for AlphaNet, was responsible for the development and oversight of the BFRG. According to Dr. Sandhaus, “There is a general lack of knowledge about Alpha-1 in both the medical and patient communities making the education of health care professionals and Alphas key to improving care. We know that many physicians have little experience caring for persons diagnosed with Alpha-1 creating significant variability in the care. Because of this, it’s important that Alphas be educated to self manage and proactively participate in their treatment.”

The BFRG is easily accessed by connecting to the Internet and navigating to www.alphanetbfrg.org. The user may follow a simple process to register as a “New User” or, as appropriate, a “Health Care Professional”. The site has been uniquely designed to present information in a personalized fashion to enhance the experience of BFRG users.

Robert C. Barrett, AlphaNet’s Chief Executive Officer, said, “AlphaNet has always been committed to providing the highest levels of patient service and support to the Alpha-1 community. The web-based Big Fat Reference Guide gives our Coordinators another tool to help Alphas help themselves.”

Alpha-1 Antitrypsin Deficiency (Alpha-1) is one of the most prevalent, potentially lethal hereditary disorders. Discovered in 1963, Alpha-1 can cause life-threatening lung disease and/or liver disease. It is a leading genetic killer of adults in the United States and a leading cause of liver transplants in children. It is estimated that 20 million Americans are undetected carriers of the Alpha-1 gene and may be at risk for lung or liver disease; 100,000 individuals are actively lung or liver affected and fewer than ten percent (10,000) have been accurately diagnosed.

AlphaNet, Inc. is a unique disease management organization based in Coconut Grove, Florida. Through its medical and operations staffs, AlphaNet provides a wide range of integrated support services to Alpha-1 patients, oversees and sponsors clinical trials involving Alpha-1 therapies, and makes available a comprehensive disease management and prevention program to improve the quality of life of those affected by Alpha-1 Antitrypsin Deficiency. AlphaNet is governed by a Board of Directors, a majority of whom are Alphas, and currently employs 25 Alphas as care coordinators to serve over 2,500 other Alphas. Since its inception in 1995 as a charitable not-for-profit corporation, AlphaNet has contributed over $14 million to support Alpha-1 research and fund Alpha-1 community programs.

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