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
Languages Spoken:
Chinese, English, Spanish
# of People with Conditions in Your Mailing List:
400
Total # of People on Mailing List:
800
Membership Size:
312
Address & Contact
Organization Address
Contact Persons
| 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 | |
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.