Why Support AXYS?

//Why Support AXYS?
Why Support AXYS?2018-07-26T22:09:04+00:00

This is only a part of what your investment in AXYS has helped to accomplish in recent years:

  • KS&A and AAKSIS merged to become AXYS. The XXYY Project joined with AXYS to become a project of AXYS.
  • Organized and launched the AXYS Clinic & Research Consortium (ACRC), comprised of eight hospitals across the U.S. It brought the leaders of the institutions together to foster increased collaboration.
  • Completely revamped our website to bring it up to modern web standards and make it even easier for families and professionals to find the information they need. (genetic.org)
  • Built a huge online library of published articles, videos, webinars and links to resources, made readily available to all visitors to our website.
  • Collaborated with the National Society of Genetic Counselors (NSGC) to sponsor a training presentation at its conference by Dr. Tartaglia and Susan Howell of the Denver Clinic and Dr. Pravin Rao of the Johns Hopkins Clinic.
  • Sponsored information and outreach exhibits at the NSGC and the Endocrine Society conferences.
  • Launched the AXYS AXYON X and Y Chromosome Variation Registry. This database of clinical and symptoms data, built in cooperation with the Patient Centered Outcomes Research Institute (PCORI) and Genetic Alliance, will revolutionize research and vastly improve our understanding of these conditions.
  • Produced and distributed thousands of free Family Information Kits.
  • Produced new downloadable brochures suitable for newly diagnosed individuals and for sharing with medical, school and therapy professionals.
  • Produced an online, interactive FAQ and companion printable, condition-specific FAQs.
  • Supported research and distribution for the landmark guidebook, “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,” then helped to get the book into libraries.
  • Collaborated with local and online support groups worldwide.
  • Established Facebook pages and support groups to provide ongoing support.
  • Provided personalized Helpline support for hundreds of families in crisis.
  • Conducted the 2015 Family Conference in Baltimore and began planning the 2017 conference in Denver
National X & Y Chromosome Variation Awareness Month Map

Seventeen states have declared May as National X & Y Chromosome Variation Awareness Month.