Children's Cardiomyopathy Foundation

General Organizational Information

Organization Name:

Organization Acronym:

CCF

Year Established:

2009

Mission Statement:

Our mission is to accelerate the search for a cure by stimulating and supporting promising research on pediatric cardiomyopathy, by educating and assisting physicians and patients on the complexities of the disease, and by increasing awareness and advocacy on behalf of affected children and their families.

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:

Cardiomyopathy

Organizational Contact Information

Title:

President & Founder

First Name:

Lisa

Last Name:

Yue

Address:

PO Box 547

Tenafly, NJ, 07670

Fax:

+1 201 227 7016

Toll Free Number:

+1 1 866 808 2873

Email:

info@childrenscardiomyopathy.org

Website Address:

http://www.childrenscardiomyopathy.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Health care professionals

Families of affected individuals

The public

Teachers

Media

Researchers

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Medical referrals

Peer support

Referrals for non-medical services

Financial referrals

Peer-to-peer counseling

Awareness programs

E-mail list

Telephone helpline

Genetic information

Advocacy

Educational materials include:

Fact sheet(s)

Membership directory

Video(s)/Movie(s)

Pamphlet(s)

Booklet(s)

Research updates

Newsletter

Bibliography

Website

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals