Twin to Twin Transfusion Syndrome Foundation

General Organizational Information

Organization Name:

Organization Acronym:

TTTSF

Year Established:

1989

Type of organization:

International Condition(s)-specific organization

Mission Statement:

The first and only nonprofit organization in the world solely dedicated to providing immediate and lifesaving educational, emotional and financial support to families, medical professionals, and other caregivers before, during, and after a diagnosis of twin to twin transfusion syndrome. Dedicated to saving the babies, improving their future health and care, providing NICU, special needs and bereavement support, furthering medical research, and keeping families together the way twins are meant to be.

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:

Twin to Twin Transfusion Syndrome (TTTS)

Organizational Contact Information

First Name:

Mary

Last Name:

Slaman-Forsythe

Address:

411 Longbeach Parkway

Bay Village, 44140

Fax:

+1 440 899 1184

Toll Free Number:

+1 800 815 9211

Email:

info@tttsfoundation.org

Website Address:

http://www.tttsfoundation.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

Spanish

English

French

German

Information provided for:

Affected individuals

Health care professionals

Care providers

Families of affected individuals

The public

Legislators

Media

Students

Researchers

Other

Range of services include:

Referrals to matching individuals/families

Professional counseling

Medical referrals

Peer support

Grief counseling

Financial referrals

Crisis intervention

Other

Awareness programs

Political action

Telephone helpline

Clinical or treatment centers

Speakers

Advocacy

Other

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Research updates

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Public

Researchers

Professionals

Other

Financial assistance for:

Medical care

Transportation

Other