Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group

Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group print

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.

Conditions Served:

Organization Name: Peutz-Jeghers Syndrome & Juvenile Polyposis Syndrome Online Support Group
Status of Org: Unincoporated Nonprofit
Type of Org: Condition – specific – International
Have 501(c)3 Status: No
Year Established: 2000
Professional/Medical Board: No
Board of Directors: No
Paid Staff: No
Services Provided in these Languages: Chinese, English, Spanish
# of People with Conditions on Your Mailing List: 400
Total # of People on Mailing List: 800
Membership Size: 360
 
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Address & Contact

Organization Address

Contact Persons

Name: Stephanie Sugars
Title/Position: Patient advocate
Phone: (999)-999-9999
Prefer to be Reached: Day or Evening
Click on the 'New Address' link to add a new address profile. New Address
 
Click on the 'New Person' link to add a new contact person for your organization. New Person
 
Click 'Update' to change an existing contact and 'delete' to remove it.
Main Contact Update (delete)

Educational Materials

Information Provided for

  • Affected Individuals
  • Families of Affected Individuals
  • Care Providers
  • Parents
  • Grandparents
  • Health Care Professionals
  • Researchers

Printed Materials Provided in

No information is available for Printed Materials Provided in.

Educational Materials Include

  • Website
  • Newsletter
  • Resource Guide

    Conferences & Workshops

    • Affected Individuals and/or Families
    • Annual PJS Meet & Greet

        Service and Support Information

        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
        • Annual Meet & Greet

        Financial Assistance for

        No information is available for Financial Assistance for.

        Research Information

        Cohort Development

        No information is available for Cohort Development.

        Disease Characterization

        Is the gene identified?: Yes
        Name of Identified Gene: STK11 on chromosome 19
        Is the protein identified?: Yes
        Name of Identified Protein: LKB1
        Is there an antibody available?: No
        Animal Models: Yes
        Is there a diagnostic test available?: Yes

        Research Management

        No information is available for Research Management.

        Research Funding

        No information is available for Research Funding.

        Resources

          No information is available for Resources.