Pierpont Syndrome Family

Pierpont Syndrome Family print

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.

Conditions Served:

Organization Name: Pierpont Syndrome Family
Acronym: PSF
Status of Org: Unincoporated Nonprofit
Type of Org: Condition – specific - National
Have 501(c)3 Status: No
Year Established: 2009
Professional/Medical Board: No
Board of Directors: No
Paid Staff: No
Services Provided in these Languages: Dutch, English
# of People with Conditions on Your Mailing List: 9
Membership Size: 20
# of Chapters: 1
 
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Address & Contact

Organization Address

Contact Persons

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Educational Materials

Information Provided for

  • Families of Affected Individuals
  • Care Providers
  • Parents
  • Health Care Professionals
  • Researchers
  • The Public
  • Teachers
  • Students
  • Media
  • Legislators

Printed Materials Provided in

  • English

        Educational Materials Include

        • Website
        • Journal Articles on Condition
        • Research Updates
        • Membership Directory

        Conferences & Workshops

        No information is available for Conferences/Workshops.

        Service and Support Information

        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

        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?: No
        Is the protein identified?: No
        Is there an antibody available?: No
        Natural History or Epidemiological Studies: Yes
        Biomarkers: No
        Well-Defined Clinical Endpoints: Yes
        In Vitro Model Systems: No
        Animal Models: No
        Is there a diagnostic test available?: No
        Are there any lead compounds?: No

        Research Management

        Link Researchers & Families: Yes
        Participant Recruitment: Yes
        Initiate and/or Conduct Research: No
        Award Research Grants: No
        Organization has Intellectual Property (IP): No
        Provide Information about Clinical Trials: Yes
        Conduct Clinical Trials: No
        Major Research Collaborators: Dr. Mary Ella Pierpont;

        Research Funding

        No information is available for Research Funding.

        Resources

          No information is available for Resources.