AlphaNet, Inc.

General Organizational Information

Organization Name:

AlphaNet, Inc.

Organization Acronym:

AlphaNet

Year Established:

1995

Type of organization:

Condition(s)-specific organization

Mission Statement:

AlphaNet has a mission. The heart of this mission is simple — to improve the lives of individuals affected by Alpha-1 Antitrypsin Deficiency. As a not-for-profit organization that is governed by, employs and serves Alphas, AlphaNet is uniquely able to develop and offer programs and services based on a very personal understanding of how Alpha-1 affects the lives of Alphas. In keeping with this mission, AlphaNet provides a wide range of specialized programs and services designed to meet the specific needs of the Alphas it serves.

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Alpha-1-Antitrypsin Deficiency

Organizational Contact Information

Title:

Research and Program Coordinator

First Name:

Rebecca

Middle Initial:

Last Name:

Lilian

Address:

2937 SW 27th Avenue Suite 305

Coconut Grove, FL, 33133

Resources and Services Provided

Languages spoken:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Peer Support

Peer-to-peer counseling

Medical referrals

Genetic information

Referrals for non-medical services

Advocacy

Telephone helpline

Educational materials include:

Fact sheet(s)

Booklet(s)

Newsletter

Research updates

Video(s)/Movie(s)

CD Roms

Resource guide

Disease Characterization:

Organization has access to patient medical records

Research Management:

Linking researchers and families

Initiating and conducting research

Providing information about clinical trials