Kids with Heart National Association for Children's Heart Disorders

General Organizational Information

Organization Name:

Organization Acronym:

Kids With Heart NACHD, Inc

Year Established:

1985

Type of organization:

Condition(s)-specific National

Mission Statement:

Our organization was formed in 1985 with the main mission of providing support, information, resources, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Yes

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Congenital Heart Defects

Congenital Heart Disease

DiGeorge Syndrome

Dilated Cardiomyopathy

Fatal Birth Anomalies

Heart Defects

Heart Rhythm Disorders

Heart Transplant

Holt-Oram syndrome

Hypertrophic Cardiomyopathy

Kawasaki Disease

Left Ventricular Non-Compaction Cardiomyopathy (LVNC)

Long QT Syndrome

Marfan syndrome

Noonan Syndrome

Pulmonary Hypertension

Restrictive Cardiomyopathy

Secondary pulmonary hypertension

Turner syndrome

VATER association

Velocardiofacial Syndrome (VCFS)

Williams syndrome

Wolff-Parkinson-White Syndrome

Organizational Contact Information

Title:

Director (volunteer)

Degree:

B.A. Education

First Name:

Michelle

Middle Initial:

Last Name:

Rintamaki

Address:

1578 Careful Drive

Green Bay, WI, 54304-2941

Phone:

+1 1 920 498 0058

Fax:

+1 1 800 538 5390

Toll Free Number:

+1 1 800 538 5390

Email:

michelle@kidswithheart.org

Website Address:

http://www.kidswithheart.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Health care professionals

The public

Teachers

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Peer-to-peer counseling

Grief counseling

Referrals for non-medical services

Awareness Programs

Advocacy

Telephone helpline

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Booklet(s)

Website

Cohort Development:

Registry of affected individuals

Number of affected individuals registered:

5000+

Blood and tissue bank location :

United States

See map: Google Maps

Research Management:

Linking researchers and families

Participant recruitment

Providing information about clinical trials

No Revisions:

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