Pierpont Syndrome Family

General Organizational Information

Organization Name:

Organization Acronym:

PSF

Year Established:

2009

Type of organization:

Condition(s)-specific organization

Mission Statement:

We provide parent support for families with children diagnosed with Pierpont Syndrome:(Plantar Lipomatosis, Unusual Facial Phenotype and Developmental Delay) and families with similar yet undiagnosed children.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Pierpont Syndrome

Organizational Contact Information

First Name:

Clyde

Middle Initial:

Last Name:

Bryant

Address:

435 Platteview Drive

Ogallala, NE, 69153

Phone:

+1 308 289 3940

Fax:

+1 308 284 6921

Email:

clydegbryant151@hotmail.com

Resources and Services Provided

Languages spoken:

English

Dutch

Printed materials available in:

English

Information provided for:

Families of affected individuals

Care providers

Parents

Health care professionals

Researchers

The public

Teachers

Students

Media

Legislators

Range of services include:

Referrals to local chapter or group

Referrals to research studies

Referrals to matching individuals/families

Peer-to-peer counseling

Medical referrals

Genetic information

Referrals for non-medical services

Non-medical services

Advocacy

E-mail list

Educational materials include:

Website

Journal articles on condition

Research updates

Membership directory