Contact Us

Information for Parents

The fastest way to reach a volunteer is by e-mail to:  support@xxyysyndrome.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:
e-mail: education@xxyysyndrome.org

Information for Medical Professionals

For medical professionals who need more information on XXYY, please contact
Ashi Daftary, MD and Janeen Daftary, RN:
e-mail: medical@xxyysyndrome.org

Information about the XXYY Project

NOTE: The XXYY Project is now under the umbrella of AXYS www.genetic.org

www.genetic.org
Information about Klinefelter Syndrome, when it was first discovered, the common characteristics, and treatment.

For inquiries regarding the XXYY Project organization, please contact
Larry Rakowski
XXYY Project Representative
AXYS Board of Directors.

e-mail: clinicliaison@xxyysyndrome.org
Phone:  Toll-Free Helpline 888-999-9428

The XXYY Project
C/O AXYS
PO Box 691
Mendenhall, PA 19357
USA

Information for Australia

Carol Vigo
e-mail: manya20@hotmail.com

Informationen ins Deutsche übersetzt

Für Eltern Anfragen oder Unterstützung erhalten Sie von
Kerstin Böttner, eine Kinderkrankenschwester und die Mutter eines Jungen mit XXYY:
e-mail: germaninfo@xxyysyndrome.org

 
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