Fibrous Dysplasia Foundation

General Organizational Information

Organization Name:

Organization Acronym:

FD Foundation

Year Established:

2004

Brochure:

FDF Brochure NEW.pdf

Type of organization:

Condition(s)-specific International

Mission Statement:

The Fibrous Dysplasia Foundation provides information, advocacy and support for patients, medical professionals and the general public and promote research for diagnosis, treatment and a cure for Fibrous Dysplasia (FD) and McCune-Albright's Syndrome (MAS), Cherubism and related diseases. Our goal is to improve the quality of life for affected individuals and their families.

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

Diseases:

Craniofacial Conditions

Deaf-Blindness

Disabilities, General

Dwarfism

Genetic Conditions

McCune-Albright Syndrome

Cushing Syndrome

Organizational Contact Information

Title:

President

Degree:

J.D.

First Name:

Charlie

Last Name:

Harles

Address:

15 Browns Ct. SE

Washington DC, 20003

United States

See map: Google Maps

Email:

info@fibrousdysplasia.org

Website Address:

http://www.fibrousdysplasia.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

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Medical referrals

Political action

Awareness Programs

Advocacy

Speakers

E-mail list

Educational materials include:

Pamphlet(s)

Website

Journal articles on condition

Video(s)/Movie(s)

CD Roms

Audiotape(s)

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals