National Tay-Sachs & Allied Diseases Association, Inc.

General Organizational Information

Organization Name:

Organization Acronym:

NTSAD

Year Established:

1957

Brochure thumbnail:

Type of organization:

Condition(s)-specific organization

Mission Statement:

The mission of the National-Tay Sachs & Allied Diseases Association is to lead the fight to treat and cure Tay-Sachs, Canavan and related genetic diseases and to support affected families and individuals in leading fuller lives.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Serves the following conditions

Diseases:

Canavan Disease

Tay-Sachs Disease

Sandhoff disease

Gaucher Disease

Krabbe Disease

Niemann-Pick disease

Gangliosidosis Generalized GM1 Type 1

Gangliosidosis GM1 Type 3

Gangliosidosis, Generalized GM1 Type 2

Organizational Contact Information

Title:

Executive Director

First Name:

Susan

Middle Initial:

Last Name:

Kahn

Address:

2001 Beacon Street - Suite 204

Boston, MA, 02135

United States

See map: Google Maps

Phone:

+1 617 277 4463

Fax:

+1 617 277 0134

Toll Free Number:

+1 800 906 8723

Email:

info@ntsad.org

Website Address:

http://www.ntsad.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Russian

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Grandparents

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

Crisis intervention

Grief counseling

Medical referrals

Clinical or treatment centers

Genetic information

Loan of medical devices/equipment

Referrals for non-medical services

Political action

Advocacy

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Newsletter

Bibliography

Research updates

Video(s)/Movie(s)

Audiotape(s)

Lending library

Resource guide

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Financial assistance for:

Scholarships

Research Management:

Awarding research grants