Dystrophic Epidermolysis Bullosa Research Association

General Organizational Information

Organization Name:

Organization Acronym:

DebRA of America

Branch/Affiliation:

CSD, NORD, SSPD, NYAMR, GA, DebRA Int'l

Year Established:

1981

Type of organization:

Condition(s)-specific organization

Mission Statement:

DebRA is dedicated to finding a cure for EB, and improving the quality of life for those living with EB.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Epidermolysis Bullosa

Organizational Contact Information

Prefix:

Ms.

Title:

Executive Director

First Name:

Mary

Last Name:

Sprague

Address:

16 E. 41st Street 3rd Floor

New York, 10017

Phone:

+1 212 868 1573

Fax:

+1 212 868 9296

Email:

staff@debra.org

Website Address:

http://www.debra.org

Resources and Services Provided

Languages spoken:

English

French

Spanish

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Medical referrals

Clinical or treatment centers

Genetic testing

Genetic information

Referrals for non-medical services

Non-medical services

Financial referrals

Political action

Advocacy

Speakers

Pen pal program

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Research updates

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Financial assistance for:

Medical care