Tuberous Sclerosis Alliance

General Organizational Information

Organization Name:

Organization Acronym:

TSA

Year Established:

1974

Brochure thumbnail:

Brochure:

tuberous_sclerosis_broc.pdf

Mission Statement:

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Serves the following conditions

Diseases:

Tuberous sclerosis

Organizational Contact Information

Title:

President and CEO

First Name:

Kari

Last Name:

Carlson

Address:

801 Roeder Road Suite 750

Silver Spring, MD, 20910-4467

Phone:

+1 301 562 9890

Fax:

+1 301 562 9870

Toll Free Number:

+1 800 225 6872

Email:

info@tsalliance.org

Website Address:

http://www.tsalliance.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Grandparents only

Health care professionals

Care providers

Families of affected individuals

The public

Teachers

Legislators

Media

Students

Researchers

Range of services include:

Referrals to local chapter or group

Referrals to matching individuals/families

Peer support

Peer-to-peer counseling

Political action

E-mail list

Telephone helpline

Clinical or treatment centers

Speakers

Training

Advocacy

Chat room

Educational materials include:

Fact sheet(s)

Magazine

Video(s)/Movie(s)

Pamphlet(s)

Booklet(s)

Newsletter

Resource guide

Website

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals