Huntington's Disease Society of America

General Organizational Information

Organization Name:

Organization Acronym:

HDSA

Branch/Affiliation:

National Office with Chapters/Affiliates

Year Established:

1967

Type of organization:

Condition(s)-specific organization

Mission Statement:

We are a national non-profit voluntary health agency dedicated to finding a cure for Huntington's Disease. We provide vital support, information and educational services to improve the lives of those affected by HD, offer resources and guidance for HD families through our national network of volunteer-based chapters and affiliates as well as through our HDSA Centers of Excellence for Family Services, and promote and support research to find a cure for HD.

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:

Huntington disease

Organizational Contact Information

Prefix:

Mr.

Title:

Director of Marketing & Communications

First Name:

Fred

Last Name:

Taubman

Address:

505 Eighth Ave Suite 902

New York, NY, 10018

Phone:

+1 212 242 1968

Fax:

+1 212 239 3430

Toll Free Number:

+1 800 345 4372

Email:

ftaubman@hdsa.org

Website Address:

http://www.hdsa.org

Resources and Services Provided

Languages spoken:

English

Spanish

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

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

Peer Support

Professional counseling

Peer-to-peer counseling

Medical referrals

Clinical or treatment centers

Genetic testing

Genetic counseling

Genetic information

Rehabilitation resource referrals

Referrals for non-medical services

Financial referrals

Awareness Programs

Advocacy

Training

Speakers

Telephone helpline

E-mail list

Chat room

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Magazine

Website

Newsletter

Journal articles on condition

Journal

Bibliography

Slides

Research updates

Video(s)/Movie(s)

CD Roms

Audiotape(s)

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Financial assistance for:

Organizational

Scholarships

Disease Characterization:

Phenotype/genotype correlation studies

Research Management:

Linking researchers and families

Initiating and conducting research

Awarding research grants

Providing information about clinical trials

Major research collaborators :

CHDI, HSG, EHDN, HDdrugworks,

Major research interests of the organization:

Therapeutic treatments and observational studies