United Mitochondrial Disease Foundation

General Organizational Information

Organization Name:

Organization Acronym:

UMDF

Year Established:

1995

Brochure thumbnail:

Brochure:

united_mitochondria_broc.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

The United Mitochondrial Disease Foundation strives to promote research and education for the diagnosis, treatment and cures of mitochondrial disorders and to provide support to affected individuals and families.

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:

Mitochondrial Disorders

Barth Syndrome

Carnitine Deficiency

LCAD deficiency

LCHAD deficiency

Leigh syndrome

MCAD Deficiency

MELAS

SCAD Deficiency

SCHAD Deficiency

VLCAD deficiency

Organizational Contact Information

Title:

Executive Director

First Name:

Charles

Middle Initial:

Last Name:

Mohan, Jr.

Address:

8085 Saltsburg Road Suite 201

Pittsburgh, PA, 15239

Phone:

+1 412 793 8077

Fax:

+1 412 793 6477

Toll Free Number:

+1 888 317 8633

Email:

info@umdf.org

Website Address:

http://www.umdf.org

Resources and Services Provided

Languages spoken:

English

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

Referrals to matching individuals/families

Genetic information

Referrals for non-medical services

Non-medical services

Financial referrals

Advocacy

Training

Speakers

Telephone helpline

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Journal articles on condition

Slides

Research updates

Video(s)/Movie(s)

CD Roms

Lending library

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals