FG Syndrome Family Alliance, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

FGSFA

Year Established:

1998

Type of organization:

Condition(s)-specific organization

Mission Statement:

The FG Syndrome Family Alliance, Inc. is a voluntary, 501(c)(3) nonprofit organization dedicated to enhancing the quality of life for those individuals and families affected by FG Syndrome or related disorders through education, peer support, referral, advocacy and research.

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:

FG Syndrome

Organizational Contact Information

Prefix:

Ms.

Title:

President

First Name:

Jackie

Middle Initial:

Last Name:

Morford

Address:

946 NW Circle Blvd #290

Corvallis, OR, 97330

United States

See map: Google Maps

Phone:

+1 617 577 9050

Email:

info@fgsyndrome.org

Website Address:

http://www.fgsyndrome.org

Resources and Services Provided

Languages spoken:

English

French

Italian

Spanish

Printed materials available in:

English

Italian

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Genetic information

Non-medical services

Advocacy

Telephone helpline

E-mail list

Educational materials include:

Pamphlet(s)

Website

Newsletter

Bibliography

Research updates

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals