Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group

General Organizational Information

Organization Name:

Year Established:

2000

Type of organization:

Condition(s)-specific International

Mission Statement:

We are an e-mail forum providing support and information for individuals, families and friends affected by PJS (Peutz-Jeghers syndrome) & JPS (Juvenile Polyposis syndrome). Medical professionals and researchers may join too.

Status of organization:

Unincorporated non-profit

Professional/Medical Board?:

501(c)3 Status?:

Paid staff?:

Board of Directors?:

Serves the following conditions

Diseases:

Peutz-Jeghers Syndrome

Juvenile polyposis syndrome

Organizational Contact Information

First Name:

Stephanie

Last Name:

Sugars

Address:

California

Phone:

+1 707 833 1298

Email:

pj4steph@aol.com

ListServe:

PJS-request@LISTSERV.ACOR.ORG

Website Address:

http://www.peutz-jeghers.com/

Resources and Services Provided

Languages spoken:

Chinese

English

Spanish

Information provided for:

Affected individuals

Families of affected individuals

Care providers

Parents

Grandparents

Health care professionals

Researchers

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Professional counseling

Peer-to-peer counseling

Medical referrals

Genetic information

Referrals for non-medical services

Advocacy

E-mail list

Educational materials include:

Website

Newsletter

Bibliography

Resource guide

Conferences/workshops for:

Affected individuals and/or families

Other:

Annual PJS Meet & Greet