Craniosynostosis and Positional Plagiocephaly Support Inc

General Organizational Information

Organization Name:

Organization Acronym:

CAPPS / CAPPSKIDS

Year Established:

1999

Type of organization:

Condition(s)-specific International

Mission Statement:

Our mission is to spread awareness, educate and offer support and guidance to families affected by Craniosynostosis and/or Positional Plagiocephaly as well as any craniofacial concern affecting the skull.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Craniofacial Conditions

Craniosynostosis

Crouzon Syndrome

Macrocephaly

Apert Syndrome

Muenke Syndrome

Saethre-Chotzen syndrome

Organizational Contact Information

Title:

President/Director

First Name:

Amy

Last Name:

Galm

Address:

Massapequa, NY, 11758

United States

See map: Google Maps

Phone:

+1 5162327015

Fax:

+1 5169773164

Email:

info@cappskids.org

Website Address:

http://www.cappskids.org

Resources and Services Provided

Languages spoken:

Arabic

Chinese

Czech

English

German

Greek

Finnish

French

Italian

Japanese

Norwegian

Portuguese

Russian

Spanish

Swedish

Printed materials available in:

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Fathers

Mothers

Siblings

Grandparents

Health care professionals

Researchers

The public

Students

Media

Legislators

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Medical referrals

Clinical or treatment centers

Awareness Programs

Advocacy

E-mail list

Educational materials include:

Website

Number of grants awarded in last calendar year :