National MPS Society

General Organizational Information

Organization Name:

Year Established:

1974

Type of organization:

Condition(s)-specific organization

Mission Statement:

The National MPS Society exists to find cures for MPS and related diseases. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.

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:

Mucolipidosis

Organizational Contact Information

First Name:

Babrara

Last Name:

Wedehase

Address:

PO Box 14686

Durham, NC, 07709-4686

Phone:

+1 919 806 0101

Fax:

+1 919 806 2055

Toll Free Number:

+1 877 677 1001

Email:

info@mpssociety.org

Website Address:

http://www.mpssociety.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 research studies

Referrals to matching individuals/families

Professional counseling

Peer-to-peer counseling

Grief counseling

Medical referrals

Genetic information

Non-medical services

Political action

Advocacy

Speakers

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Magazine

Website

Newsletter

Slides

Research updates

Video(s)/Movie(s)

CD Roms

Resource guide

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Financial assistance for:

Assistive devices

Scholarships