Resources
This section provides a series of links to other resources that may be useful to some families dealing with Klinefelter syndrome or another X and/or Y aneuploidy condition. We are aware that there is wide variability in the signs and symptoms associated with these conditions and not everyone will require the same resources. However, we’re hopeful that these resources may be useful to a significant percentage of this population and those interested in our research study.
The Association for X and Y Variations (AXYS)
The Association for X and Y Variations (AXYS) is an advocacy, education and support organization for individuals with X and Y chromosome variations and their families. The mission of AXYS is to help individuals with one or more extra X and/or Y chromosomes and their families to lead fuller, more productive lives.
AXYS fulfills this mission by satisfying previously unmet needs and improving the lives of those impacted by the X and Y chromosome aneuploidies including Klinefelter syndrome (47,XXY), Trisomy X (47,XXX), 47,XYY syndrome, 48,XXYY, and related genetic conditions through:
- Support geared to the needs of individuals, their families, and the professionals who serve them
- Education that provides current, scientifically accurate information to our constituents and to the public
- Promoting research that advances knowledge of the field
- Improving treatment options and access for those affected by the conditions
AXYS celebrates the diversity of the human family, including sex and gender, skin color, ethnicity, religion, sexual orientation, gender identity, age, socioeconomic status, physical characteristics and mental abilities.
Living with XXY
Living with XXY is a nonprofit charitable organization built to inspire people and families living with Klinefelter syndrome (47 XXY). With a focus on the positive traits and successes of individuals across the spectrum, they plan to work to build a community through awareness, education, and support.
Their vision includes:
- Providing a mentorship platform through which younger generations can learn from the experiences of others.
- Working with school systems to put a face to theories in textbooks.
- Partnering with therapists, counselors and other professionals to provide resources and support which promote life/social skills.
- Collaboration with medical professionals and researchers to explore shared positive traits.
- Helping to erase the stigmas associated with Klinefelter syndrome, so people are able to openly talk about their experience; and
- Fostering positive interactions within our community to help people realize they are not alone.
Sex Chromosome Aneuploidy Clinics
Stanford University School of Medicine: Center for Interdisciplinary Brain Sciences Research
Stanford, California
X and Y variations seen: All
Ages seen: Children and Young Adults
Medical Directors: Allan Reiss, MD and David Hong, MD
Appointments: Clinic Coordinator – Reiko Riley, reikor@stanford.edu
Nemours Alfred I. duPont Hospital for Children: eXtraordinarY Kids Clinic
Wilmington, Delaware
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Judith Ross, MD
Appointments: Clinic Coordinator - Karen Kowal, 215-955-9008, kkowal@nemours.org
Children’s Hospital Colorado: eXtraordinarY Kids Clinic
Denver, Colorado
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Nicole Tartaglia, MD
Clinic Coordinator: Susan Howell, MS, MBA, CGC
Appointments: 720-777-8361, extraordinarykidsclinic@childrenscolorado.org
Cleveland Clinic Children's Endocrinology: eXtraordinarY Kids Care
Cleveland, Ohio
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Appointments: Stephanie Lemasters, 216-444-7987
Cedars Sinai Hospital: eXemplarY Kids Clinic
Los Angeles, California
X and Y variations seen: All
Ages seen: Birth to age 21
Medical Co-Director: Yana J. Tavyev MD and B. Michelle Schweiger, DO, MPH
Appointments/Questions: 310-423-7940
Pediatric Endocrinology website
Useful Links
Coming soon!
Disclaimer: links to other sites. This webpage has links to private organizations. Stanford University is not responsible for the contents of any "off-site" web page referenced from this server.