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Information for Parents
The fastest way to reach a volunteer is by e-mail to: firstname.lastname@example.org
If you must call because you don’t have e-mail, please note:
The XXYY Project helpline is managed through our sponsor organization, AXYS and forwarded to the XXYY Project volunteer. AXYS serves people with all X & Y chromosome variations (Klinefelter Syndrome, Trisomy X, XYY). When you call, please make sure you state that you are calling about XXYY specifically. Your information will be given to a volunteer who will call you back when they are available, which may not be quickly.
PLEASE DO NOT EXPECT IMMEDIATE CALL BACK AND PLEASE DO NOT KEEP CALLING WHEN YOU DON’T GET IMMEDIATE CALL BACK. Our volunteers work full-time jobs. Before they call you back, they frequently need time to find the answer to your question.
Phone (Toll-Free): (888) 999-9428
Outside U.S. / Canada: email
If you have been in contact with us before, the XXYY Project provides the majority of our support through our parent listserv. Specific questions about how to deal with particular issues should be asked there, not by calling or emailing us directly. Our volunteers have limited time and are not able to provide extensive 1:1 assistance. Please email us to ask to join the listserv.
Information for Teachers
For teachers with questions about IEP’s and behavioural issues relating to 48 XXYY Syndrome, please contact
Val Kellogg, teacher and the mother of a young man with XXYY:
Information for Medical Professionals
For medical professionals who need more information on XXYY, please contact
Ashi Daftary, MD and Janeen Daftary, RN:
Information about the XXYY Project
NOTE: The XXYY Project is now under the umbrella of AXYS www.genetic.org
Information about Klinefelter Syndrome, when it was first discovered, the common characteristics, and treatment.
Phone: Toll-Free Helpline 888-999-9428
The XXYY Project C/O AXYS
PO Box 691
Mendenhall, PA 19357 USA
Information for Australia
Informationen ins Deutsche übersetzt
Für Eltern Anfragen oder Unterstützung erhalten Sie von
Kerstin Böttner, eine Kinderkrankenschwester und die Mutter eines Jungen mit XXYY: