1p36 Deletion Support & Awareness

General Organizational Information

Organization Name:

Organization Acronym:

1p36 DSA

Year Established:

2009

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to help individuals affected by chromosome 1p36 abnormalities overcome the obstacles they face to be able to lead healthy, happy and productive lives. We do this by providing support and education to their families and increasing awareness of chromosome 1p36 abnormalities in the public and medical communities.

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:

1p36 Deletion Syndrome

Organizational Contact Information

Title:

President

First Name:

Ken

Last Name:

Shirtcliff

Address:

906 NE Greenwood Avenue

Bend, OR, 99701

United States

See map: Google Maps

Fax:

+1 1 801 405 3641

Email:

info@1p36dsa.org

Website Address:

http://www.1p36dsa.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Grandparents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Genetic information

Awareness Programs

Advocacy

E-mail list

Educational materials include:

Website

Newsletter

Conferences/workshops for:

Affected individuals and/or families