Velo-Cardio-Facial Syndrome Educational Foundation, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

VCFSEF

Year Established:

1993

Type of organization:

International Condition(s)-specific organization

Mission Statement:

The Velo-Cardio-Facial Syndrome Educational Foundation, Inc. is an organization comprised of both professional and lay people whose purpose is to educate the public, the scientific community, families of individuals with Velo-Cardio-Facial syndrome, and individuals with Velo-Cardio-Facial syndrome (VCF) about this common genetic disorder.

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

Organizational Contact Information

Prefix:

Dr.

Title:

Executive Director

Degree:

PhD

First Name:

Karen

Middle Initial:

Last Name:

Golding-Kushner

Address:

PO Box 874

Milltown, 08850

United States

See map: Google Maps

Phone:

+1 732 238 8803

Toll Free Number:

+1 1 866 VCF SEF5

Email:

info@vcfsef.org

Website Address:

http://www.vcfsef.org

Resources and Services Provided

Languages spoken:

Spanish

Norwegian

Arabic

English

Finnish

French

Italian

Swedish

Japanese

Printed materials available in:

Spanish

Arabic

English

French

Italian

Chinese

Japanese

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Media

Students

Researchers

Other

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Other

Awareness programs

E-mail list

Telephone helpline

Genetic information

Speakers

Advocacy

Other

Educational materials include:

Fact sheet(s)

Slides

Journal articles on condition

Pamphlet(s)

Research updates

Newsletter

Audiotape(s)

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Other

Financial assistance for:

Other