HHT Foundation International

General Organizational Information

Organization Name:

Year Established:

1991

Type of organization:

International Condition(s)-specific organization

Mission Statement:

Our mission is to find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT.

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:

Hereditary hemorrhagic telangiectasia

Organizational Contact Information

Title:

Executive Director

First Name:

Marianne

Last Name:

Clancy

Address:

PO Box 329

Monkton, MD, 21111

Fax:

+1 410 357 0655

Toll Free Number:

+1 800 448 6389

Email:

mariannes.clancy@hht.org

Website Address:

http://www.hht.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Legislators

Media

Researchers

Other

Range of services include:

Referrals to local chapter or group

Referrals to matching individuals/families

Professional counseling

Medical referrals

Other

Genetic testing

Awareness programs

Political action

E-mail list

Telephone helpline

Genetic information

Clinical or treatment centers

Genetic counseling

Training

Advocacy

Chat room

Other

Educational materials include:

Fact sheet(s)

Membership directory

Journal articles on condition

Pamphlet(s)

Booklet(s)

Research updates

Newsletter

Bibliography

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Other

Financial assistance for:

Other