National Fragile X Foundation

General Organizational Information

Organization Name:

Organization Acronym:

NFXF

Year Established:

1984

Mission Statement:

The National Fragile X Foundation unites the Fragile X community to enrich lives through educational & emotional support, promote public & professional awareness, & advance research toward treatments & a cure for Fragile X.

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

Organizational Contact Information

Title:

Executive Director

First Name:

Robert

Middle Initial:

Last Name:

Miller

Address:

PO Box 37

Walnut Creek, CA, 94597

Phone:

+1 925 938 9300

Fax:

+1 925 938 9315

Toll Free Number:

+1 800 688 8765

Email:

NATLFX@FragileX.org

Website Address:

http://www.FragileX.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Mothers only

Grandparents only

Health care professionals

Care providers

Families of affected individuals

Fathers only

The public

Teachers

Legislators

Parents only

Siblings only

Media

Students

Researchers

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Referrals for non-medical services

Non-medical services

Awareness programs

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Advocacy

Educational materials include:

Fact sheet(s)

Video(s)/Movie(s)

Journal articles on condition

Pamphlet(s)

Journal

Booklet(s)

Newsletter

Website

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals