Goldenhar Syndrome Support Network

General Organizational Information

Organization Name:

Organization Acronym:

GSSN

Branch/Affiliation:

A Program of AmeriFace

Year Established:

1991

Mission Statement:

The Goldenhar Syndrome Support Network provides support and information to individuals with Goldenhar Syndrome and their families.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Goldenhar Syndrome

Organizational Contact Information

Title:

Executive Director

First Name:

Debbie

Last Name:

Oliver

Address:

PO Box 751112

Las Vegas, 89130

United States

See map: Google Maps

Phone:

+1 702 769 9264

Fax:

+1 702 341 5351

Toll Free Number:

+1 888 486 1209

Email:

info@ameriface.org

ListServe:

http://health.groups.yahoo.com/group/goldenharsyndrome/

Website Address:

http://www.goldenharsyndrome.org

Resources and Services Provided

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

Medical referrals

Rehabilitation resource referrals

Peer support

Grief counseling

Referrals for non-medical services

Financial referrals

Non-medical services

Other

Peer-to-peer counseling

E-mail list

Telephone helpline

Genetic information

Speakers

Pen pal program

Loan of medical devices/equipment

Training

Advocacy

Other

Educational materials include:

Newsletter

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Other

Financial assistance for:

Other