CHARGE Syndrome Foundation, Inc.

General Organizational Information

Organization Name:

Year Established:

1993

Brochure:

brochure 01-29-2010.pdf

Type of organization:

Condition(s)-specific International

Mission Statement:

The mission of the CHARGE Syndrome Foundation, Inc. is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

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:

CHARGE Syndrome

Organizational Contact Information

Title:

Administrative Assistant

First Name:

Lori

Last Name:

Bookstaver

Address:

141 Middle Neck Rd.

Sands Point, NY, 11050

United States

See map: Google Maps

Phone:

+1 516 684 4720

Fax:

+1 516 883 9060

Toll Free Number:

+1 800 442 7604

Email:

info@chargesyndrome.org

Website Address:

http://www.chargesyndrome.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Genetic information

E-mail list

Educational materials include:

Fact sheet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Bibliography

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Scholarships

Cohort Development:

Blood and Tissue Banking

Blood and tissue bank vendor:

NDRI (National Disease Research Interchange)

Blood and tissue bank location :

National Disease Research Interchange

1628 John F. Kennedy Blvd., 8th Floor Philadelphia, PA 19103

United States

See map: Google Maps

Research Management:

Linking researchers and families

Participant recruitment

Awarding research grants