MHE Research Foundation

General Organizational Information

Organization Name:

Organization Acronym:

MHERF

Year Established:

1969

Brochure thumbnail:

Brochure:

mherf_broc.pdf

Mission Statement:

The MHE Research Foundation is a nonprofit organization for researchers, families and physicians dealing with Multiple Hereditary Exostoses, a rare genetic bone disease. The MHE Research Foundation five point mission is to REACH, advance and support research, education, and advocacy, in order to bring hope to families affected by this disease.

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:

Multiple hereditary exostoses

Organizational Contact Information

Prefix:

Ms.

Title:

Vice President & National Director of Research

First Name:

Sarah

Middle Initial:

Last Name:

Ziegler

Address:

149-34 16th Road

Whitestone, NY, 11357

Phone:

+1 718 569 0479

Fax:

+1 509 471 1758

Toll Free Number:

+1 1 877 486 1758

Email:

sarahziegler@mheresearchfoundation.org

Website Address:

http://www.mheresearchfoundation.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Italian

Spanish

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Media

Researchers

Range of services include:

Referrals to research studies

Medical referrals

Peer support

Non-medical services

Genetic testing

Awareness programs

Political action

Telephone helpline

Genetic information

Clinical or treatment centers

Speakers

Genetic counseling

Advocacy

Educational materials include:

Fact sheet(s)

Video(s)/Movie(s)

Slides

Journal articles on condition

Pamphlet(s)

Research updates

Newsletter

Resource guide

Website

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals