International 22q11.2 Deletion Syndrome Foundation

General Organizational Information

Organization Name:

Year Established:

2005

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is improving the quality of life for individuals affected by the 22q11.2 deletion syndrome through family and professional partnerships.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Velocardiofacial Syndrome (VCFS)

DiGeorge Syndrome

22q11.2 Deletion Syndrome

Organizational Contact Information

First Name:

Thomas

Last Name:

Bell

Address:

4 State Road #201

Media, PA, 19063

United States

See map: Google Maps

Phone:

+1 877 739 1849

Fax:

+1 610 891 2377

Toll Free Number:

+1 877 739 1849

Email:

info@22q.org

Website Address:

http://www.22q.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

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Medical referrals

Genetic information

Awareness Programs

Training

Summer Camp

Educational materials include:

Booklet(s)

Website

Newsletter

Bibliography

Conferences/workshops for:

Affected individuals and/or families

Public

Professionals