Dubowitz Syndrome Family Support

General Organizational Information

Organization Name:

Year Established:

1999

Type of organization:

Condition(s)-specific organization

Mission Statement:

We provide family-friendly, helpful, and relevant information for families of children with Dubowitz Syndrome.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Organizational Contact Information

First Name:

Sharon

Last Name:

Terzian

Address:

106 Verndale Street

Warwick, RI, 02889

Phone:

+1 401 737 3138

Email:

dubowitzsyndrome@netzero.net

ListServe:

dubowitz_syndrome@yahoogroups.com

Website Address:

http://www.dubowitzsyndrome.net

Resources and Services Provided

Languages spoken:

English

Information provided for:

Affected individuals

Families of affected individuals

Parents

Fathers

Mothers

Siblings

Health care professionals

Researchers

Teachers

Media

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Peer-to-peer counseling

Medical referrals

Genetic information

Rehabilitation resource referrals

Advocacy

Speakers

Pen pal program

Telephone helpline

E-mail list

Chat room

Educational materials include:

Website

Research Management:

Linking researchers and families

Initiating and conducting research

No Revisions:

I have reviewed my listing and there are no updates to be made at this time.