Prader-Willi Syndrome Association (USA)

General Organizational Information

Organization Name:

Organization Acronym:

PWSA (USA)

Year Established:

1975

Type of organization:

Condition(s)-specific organization

Mission Statement:

Prader-Willi Syndrome Association (USA) is dedicated to serving individuals affected by Prader-Willi syndrome (PWS), their families, and interested professionals.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Yes

Board of Directors?:

Serves the following conditions

Diseases:

Prader-Willi syndrome

Organizational Contact Information

Title:

Executive Director

First Name:

Craig

Last Name:

Polhemus

Address:

8588 Potter Park Drive Suite 500

Sarasota, FL, 34238

Phone:

+1 941 312 0400

Fax:

+1 941 312 0142

Toll Free Number:

+1 800 926 4797

Email:

exdir@pwsausa.org

Website Address:

http://www.pwsausa.org

Resources and Services Provided

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

Professional counseling

Peer-to-peer counseling

Crisis intervention

Medical referrals

Referrals for non-medical services

Political action

Speakers

Telephone helpline

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Newsletter

Bibliography

Slides

Video(s)/Movie(s)

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Scholarships