Alagille Syndrome Alliance

General Organizational Information

Organization Name:

Year Established:

1993

Type of organization:

Condition(s)-specific International

Mission Statement:

The purpose of the Alliance 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.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Alagille Syndrome

Liver Disease

Organizational Contact Information

Title:

President

First Name:

Cindy

Middle Initial:

Last Name:

Hahn

Address:

10500 Southwest Starr Drive

Tualatin, OR, 97062

United States

See map: Google Maps

Phone:

+1 503 885 0455

Email:

alagille@alagille.org

Website Address:

http://www.alagille.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Health care professionals

Researchers

The public

Teachers

Students

Media

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Advocacy

Speakers

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Research updates

Video(s)/Movie(s)

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Research Management:

Linking researchers and families

Participant recruitment