Erythropoietic Protoporphyria Research & Education Fund

General Organizational Information

Organization Name:

Organization Acronym:

EPPREF

Year Established:

1978

Type of organization:

Condition(s)-specific organization

Mission Statement:

The mission of EPPREF is to provide information on EPP to patients, their families and to physicians.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Erythropoietic Protoporphyria

Organizational Contact Information

Prefix:

Dr.

Title:

Director

Degree:

M.D.

First Name:

Micheline

Last Name:

Mathews-Roth

Address:

Channing Lab, Brigham & Womens Hospital 181 Longwood Avenue

Boston, MA, 02115-5884

Phone:

+1 617 525 8249

Email:

mmmathroth@rics.bwh.harvard.edu

Website Address:

http://www.brighamandwomens.org/eppref

Resources and Services Provided

Languages spoken:

English

French

Printed materials available in:

English

Information provided for:

Affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Media

Range of services include:

Referrals to research studies

Professional counseling

Medical referrals

Telephone helpline

Educational materials include:

Fact sheet(s)

Website

Newsletter