PKS Kids

General Organizational Information

Organization Name:

PKS Kids

Year Established:

2009

Type of organization:

National Condition(s)-specific organization

Mission Statement:

To promote research, provide education, and raise awareness within the medical community in order to ensure early diagnoses of children with Pallister-Killian Syndrome (PKS). To provide resources and support to families, therapists and caregivers of children with PKS.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Organizational Contact Information

First Name:

Kate

Last Name:

Hettiger

Address:

Phone:

+1 314 620 4316

Email:

khettiger@pkskids.net

Website Address:

http://www.pkskids.net

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Affected individuals

Care providers

Families of affected individuals

Teachers

Media

Students

Researchers

Other

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer support

Other

Peer-to-peer counseling

Awareness programs

E-mail list

Speakers

Chat room

Other

Educational materials include:

Pamphlet(s)

Research updates

Newsletter

Resource guide

Website

Other

Conferences/workshops for:

Affected individuals and/or families

Researchers

Professionals

Other

Financial assistance for:

Medical care

Assistive devices

Other