Coffin-Lowry Syndrome Foundation

General Organizational Information

Organization Name:

Organization Acronym:

CLSF

Year Established:

1991

Type of organization:

Condition(s)-specific organization

Mission Statement:

The purpose of CLSF is to provide a clearinghouse for information on Coffin-Lowry Syndrome (CLS), and to provide families affected by CLS a general forum in which to exchange information, ideas and advice.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Coffin-Lowry Syndrome

Organizational Contact Information

Title:

Chair

First Name:

Mary

Last Name:

Hoffman

Address:

675 Kalmia Place NW

Issaquah, WA, 98027

Phone:

+1 425 427 0939

Email:

CoffinLowry@Gmail.com

Website Address:

http://www.clsf.info

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Siblings

Grandparents

Health care professionals

Researchers

The public

Teachers

Range of services include:

Referrals to matching individuals/families

Genetic information

Pen pal program

Telephone helpline

E-mail list

Chat room

Educational materials include:

Website

Newsletter