At AXYS, we are proud of our organization and its history, and grateful for the tireless contributions of so many people who have shared their time and energy to assist those who reach out to us for help. We also recognize that in a population in which 1 in 500 people is affected by an X or Y chromosome variation, we need and welcome all the allies and assistance we can get to help those in need.
That’s why this page is devoted to information and links from a variety of sources, all of whom share a common goal to be of service to the AXYS community. You’ll find links to many of those resources below. AXYS supports multiple forums for individuals and their families who are affected by X or Y chromosome variations. Also, be sure to look in our library for articles regarding a wide range of issues affecting individuals with X or Y chromosome variations.
Please also note that AXYS provides these resources with the understanding that each has its own viewpoints, methods, and messages. In many cases, information they provide may conflict to some degree or other with our own. We of course respect every group’s independence, and would only note that the resources we provide here do not constitute an explicit or implied endorsement of any particular view. Disparate viewpoints reflect the fact that science is constantly evolving and different groups may interpret evidence differently. In all cases, we urge you to consult with your medical professional(s) and use your best judgment to consider all the facts and opinions presented by AXYS and other organizations.
- Klinefelter Syndrome Information and Support
- AAKSIS now merged with KS&A to become AXYS
- Klinefelter Educational Support Team (KEST)
- Klinefelter’s Syndrome Association (UK)
- Klinefelter Organisation UK
- Nederlandse Klinefelter Vereniging
- Cyberpoli (Netherlands)
- VALENTIN A.P.A.C. Association de Porteurs d’Anomalies Chromosomiques
- Deutsche Klinefelter-Syndrom Vereinigung e.V. (Germany)
- Facts About Klinefelter (Germany)
- Hielke de Wolf (Blog and Resource – [Dutch])
- Klinefelter’s Syndrome Association of Canada
- XXY Klinefelter (Norway)
- Klinefelters syndrom(Norway)
- Síndrome de Klinefelter (Spain)
47,XXX (Trisomy X)
- Contactgroep Triple X Syndroom, The Netherlands (Translations in English, Français, Deutsch, Español)
- VALENTIN A.P.A.C. Association de Porteurs d’Anomalies Chromosomiques (France)
- XYY Brochure from Unique – this is an excellent resource
- The XXYY Project – The mission of the XXYY Project is to build the capacity of parents and service providers to assist males with XXYY in leading purposeful, productive lives.
There are many Facebook groups around the world offering support for those affected by an X or Y chromosome variation. Look here if you are interested in pursuing such contact. As a prelude to any such involvement, we strongly suggest you read the linked articles below to ensure your and your loved ones’ online safety.
Explaining a Diagnosis to Children and Adolescents
These are member-recommended resources that may be useful to help parents explain an X and Y chromosome variation diagnosis to a child or adolescent. Please review these carefully before sharing this information with your child.
Also recognize that each of these may help you even if they do not specifically address your child’s condition. The general information presented in these, when combined with our own brochures and the FAQ, could help guide your conversation with your child.
AXYS celebrates the diversity of the human family. This includes sex and gender, skin color, ethnicity, religion, sexual orientation, gender identity, age, socioeconomic status, physical characteristics, and mental abilities. While the majority of 47,XXY individuals we serve identify as male, a minority identifies as “intersex” or another gender. Many also consider themselves as “being XXY” rather than “having XXY.”
The organizations listed below are separate from AXYS and each has a unique mission focused on intersex. We respect all these organizations, but we also recognize that some of their positions and interpretations of information may not align with yours or ours. If you perhaps have questions about gender identity for yourself or your loved ones, we encourage you to explore gender counseling. Contact us for referrals to genetic counselors in your area.
Education and Learning Disabilities
- Wrightslaw – Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
- Wrightslaw Yellow Pages for Kids with Disabilities – “Find educational consultants, psychologists, diagnosticians, health care specialists, academic tutors, speech language therapists, advocates, and attorneys. You will also find government programs, grassroots organizations, special educations schools, and parent support groups.” Find resources by state.
- National Center for Learning Disabilities – Committed to ensuring that all students with learning disabilities graduate from high school with a standard diploma—prepared for college and the workplace. Learn more about our credo, programs, events, and more.
- CEC Smartbrief – Special education news in proud partnership with the Council for Exceptional Children. (Free registration required.)
- Friendship Circle Blog – Special Needs Resources for Parents & Educators