Ehlers-Danlos National Foundation

General Organizational Information

Organization Name:

Organization Acronym:

EDNF

Year Established:

1985

Type of organization:

Condition(s)-specific organization

Mission Statement:

Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome.

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:

Ehlers-Danlos Syndrome

Organizational Contact Information

Title:

President/CEO

First Name:

Cynthia

Last Name:

Lauren

Address:

3200 Wilshire Blvd Suite 1601, South Tower

Los Angeles, CA, 90010

Phone:

+1 213 368 3800

Fax:

+1 213 427 0057

Email:

staff@ednf.org

Website Address:

http://www.ednf.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Health care professionals

The public

Media

Range of services include:

Referrals to local chapter or group

Medical referrals

Referrals for non-medical services

Speakers

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Conferences/workshops for:

Researchers

Professionals