Accomplishments

//Accomplishments
Accomplishments2018-12-03T20:52:17+00:00

2018 Accomplishments

The donation of time and talent from our dedicated board and volunteers, supported by the generous contributions of donors has helped us accomplish:

AXYS Clinic & Research Consortium (ACRC)

Digital Communications, Education and Resources

  • Completed the transition of the XXYY Project under the AXYS umbrella by moving online documents and information from xxyysyndrome.org to genetic.org.
  • Expanded our online library of published articles. Numerous legal and educational resources were added.
  • Produced eleven 90-minute webinars featuring leading specialists. All are available on our website and YouTube channel.
  • Produced new downloadable brochures suitable for newly diagnosed individuals and for sharing with medical, school and therapy professionals. Updated and reprinted four condition-specific and one general AXYS brochure and made these available to the X and Y variation community, both electronically and in print.

Supporting Research

Support for Individuals and Families

  • Began planning the 2019 Family Conference in Atlanta.
  • Distributed the landmark ebook, “Living with Klinefelter Syndrome (47,XXY) Trisomy X (47,XXX) and 47,XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosomes”.
  • Collaborated with local and online support groups worldwide.
  • Manage general and condition specific Facebook pages and support groups to provide continual and confidential support and help for individuals and families.
  • Provided personalized support for nearly 400 families via our toll free Helpline (888) 999-9428.

Collaborating with Health Professionals

  • Joined healthcare professional group to help develop universal newborn testing for SCA conditions.
  • Sponsored information and outreach exhibits reaching nearly 10,000 attendees at the National Society of Genetic Counselors and the Endocrine Society conferences.
A map showing the locations of the ACRC clinics in the United States.