Phelan-McDermid Syndrome Foundation

General Organizational Information

Organization Name:

Organization Acronym:

PMSF

Year Established:

2003

Type of organization:

Condition(s)-specific International

Mission Statement:

Our mission is to build an alliance of family support for individuals with chromosome 22q13 deletion and to provide families and professionals an opportunity for scientific education and international exchange.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

22q13 Deletion Syndrome

Organizational Contact Information

Title:

President

Degree:

First Name:

Susan

Last Name:

Lomas

Address:

P.O. Box 1016

Venice, FL, 34284

United States

See map: Google Maps

Phone:

+1 941 485 8000

Fax:

+1 941 485 8000

Email:

sam22q13@aol.com

Website Address:

http://www.pmsf.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

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Medical referrals

Referrals for non-medical services

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Video(s)/Movie(s)

Membership directory

Conferences/workshops for:

Affected individuals and/or families