The donation of time and talent from our dedicated board and volunteers, supported by the generous contributions of donors has helped us accomplish:
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.
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 1-267-338-4262.
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.