Resources
While there is a lot of good information accessible through the internet, there is also information on the internet that is not accurate, so the source of information to be reliable, really matters. In addition, we also know that families can benefit in many ways from connecting with each other and hearing each other’s stories.
Below are some reliable and family connecting resources to share:
- AXYS (genetic.org) is the national support group dedicated to patient education and support for X&Y chromosome variations. They provide information, support and resources for families across the U.S.
- XXYY Project (genetic.org/variations/about-xxyy) provides patient education about boys with XXYY syndrome.
- Mathew's story: How the diagnosis of an extra X chromosome helped Mathew find himself. https://www.childrenscolorado.org/community/patient-stories/mathew-klinefelter-syndrome/
- Living With XXY (livingwithxxy.com): Spreading Positivity and Awareness, by Ryan Brigante who has XXY.
For Turner syndrome patients:
- Turner Syndrome Colorado (turner-syndrome.org) is a local support group for parents of girls with TS and women with TS.
- Turner Syndrome Global Alliance (tsgalliance.org) is a global TS advocacy group founded by parents of young women with TS. They advocate for TS research and developed a national network for TS clinics. The eXtraOrdinary Kids Turner Syndrome Clinic is designated as a TS Regional Resource Center by TSGA.
- Turner Syndrome Society of the United States (turnersyndrome.org) is a national support group that sponsors local support groups and strives to advance knowledge, research, and support for families and girls with Turner syndrome.
Resources for talking with your child about their diagnosis:
- For XXY (Klinefelter Syndrome): XXY disclosure flyer
- For XYY: XYY disclosure flyer
- For XXX (Trisomy X, Triple X): XXX disclosure flyer