Sudden Arrhythmia Death Syndromes Foundation

General Organizational Information

Organization Name:

Organization Acronym:

SADS

Year Established:

1992

Brochure thumbnail:

Brochure:

SADS Com Broch web.pdf

Type of organization:

Condition(s)-specific organization

Mission Statement:

Our mission is to save the lives of young people who are genetically predisposed to sudden death due to cardiac arrhythmias and to provide education and support to families and the medical community.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Idiopathic Ventricular Fibrillation (IVF)

Long QT Syndrome

Brugada Syndrome

Wolff-Parkinson-White Syndrome

Organizational Contact Information

Prefix:

Ms.

Title:

Executive Director

Degree:

R.N.

First Name:

Alice

Last Name:

Lara

Address:

508 East South Temple Suite 202

Salt Lake City, UT, 84102

United States

See map: Google Maps

Phone:

+1 801 531 0941

Fax:

+1 801 531 0945

Toll Free Number:

+1 800 786 7723

Email:

alice@sads.org

Website Address:

http://www.StopSADS.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

Chinese

English

French

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Parents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Peer-to-peer counseling

Medical referrals

Genetic information

Referrals for non-medical services

Political action

Awareness Programs

Advocacy

Training

Speakers

Telephone helpline

E-mail list

Genealogy

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Journal articles on condition

Slides

Video(s)/Movie(s)

Conferences/workshops for:

Affected individuals and/or families

Professionals

Research Management:

Linking researchers and families

Providing information about clinical trials