Support Organization for Trisomy 18, 13 & Related Disorders

Support Organization for Trisomy 18, 13 & Related Disorders print

Mission Statement:

SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and related chromosomal disorders. Support can be provided during prenatal diagnosis, the child's life and after the child's passing. SOFT is committed to respect a family's personal decision and to the notion of parent - professional relationships.

Conditions Served:

Edwards Syndrome, Trisomy 13, Trisomy disorders

Organization Name: Support Organization for Trisomy 18, 13 & Related Disorders
Acronym: SOFT
Status of Org: Incorporated Nonprofit
Type of Org: Condition – specific - National
Have 501(c)3 Status: Yes
Year Established: 1980
Professional/Medical Board: Yes
Board of Directors: Yes
Paid Staff: No
Services Provided in these Languages: English
Other Languages Spoken: some literature in Spanish and full "google translate" on website
Membership Size: 1200
 
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Address & Contact

Organization Address

Phone: 585-594-4621
Toll Free #: 800-716-7638
Address 1: 2982 So. Union Street
City: Rochester
State: New York
Zip/Postal Code: 14624
Country: United States
Prefer to be Contacted: By Email

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Educational Materials

Information Provided for

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

Printed Materials Provided in

  • English
  • Spanish
  • Primary language is English; major documents are also available in Spanish. All materials are trans

    Educational Materials Include

    • Fact Sheet(s)
    • Booklet(s)
    • Bibliography
    • Slides
    • Video(s)/Movie(s)

    Conferences & Workshops

    • Affected Individuals and/or Families
    • Researchers
    • Professionals
    • Annual conference for families and professionals.

    Service and Support Information

    Range of Services Include

    • Referrals to Local Chapter or Group
    • Peer Support
    • Medical Referrals
    • Referrals for Non-medical Services
    • Telephone Helpline

    Financial Assistance for

    • Transportation
    • Scholarships For Affected Individuals
    • Also for research.

      Research Information

      Cohort Development

      Registry of Affected Individuals: Yes
      # of Affected Individuals Registered: 4000
      Blood & Tissue Bank: No
      # of Unaffected Individuals Registered: 2000
      Are your medical records self reported, provider entered, or a combination of the two?: Self Reported
      # of Medical Records on Affected Individuals: 4000
      Do you collect human genetic genotype data?: No
      Do you collect human genetic gene expression data?: No
      Do you collect human genetic epigenetic data?: No

      Disease Characterization

      Name of Identified Gene: Chromosome disorders, not gene disorders, per se
      Natural History or Epidemiological Studies: Yes

      Research Management

      Link Researchers & Families: Yes
      Participant Recruitment: Yes
      Initiate and/or Conduct Research: Yes
      Award Research Grants: Yes
      Organization has Intellectual Property (IP): Yes
      Provide Information about Clinical Trials: No
      Conduct Clinical Trials: No
      Current Projects: Growth Charts, Surgery Info, Support

      Research Funding

      # of Grants Awarded in Last Calendar Year: 1

      Resources

      • Bibliography of Medical Articles/Research

        SOFT maintains a bibliography of medical articles so as to concentrate trisomy information in one place for families and medical professionals. Resource types include documents and hyperlinks.

        Updated: May 28, 2013