National Fabry Disease Foundation

General Organizational Information

Organization Name:

Organization Acronym:

NFDF

Year Established:

2005

Type of organization:

National organization

Mission Statement:

The mission of the National Fabry Disease Foundation is to help ensure that all individuals with Fabry disease are identified, diagnosed and treated in time to avoid a diminished quality of life or life threatening consequences, to provide assistance to individuals with Fabry disease and their families, to provide Fabry disease education and awareness, to promote continued research and data-gathering to improve treatment opportunities and to find a cure.

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:

Fabry Disease

Organizational Contact Information

Prefix:

Mr.

Title:

Founder and President

Degree:

First Name:

Jerry

Last Name:

Walter

Address:

4301 Connecticut Ave. N.W. Suite 404

Washington, DC, 20008-2369

United States

See map: Google Maps

Phone:

+1 919 732 9095

Fax:

+1 800 651 9135

Toll Free Number:

+1 800 651 9131

Email:

info@TheNFDF.org

Website Address:

http://www.TheNFDF.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Professional counseling

Medical referrals

Awareness Programs

Advocacy

Speakers

Telephone helpline

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition