Helpline: 1‑267‑338‑4262 | helpline@genetic.org
AXYS - The Association for X&Y Chromosome Variations

Help Us to Fulfill Our Mission

Helpline: 1‑267‑338‑4262 | info@genetic.org

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Professional Directory

Professional Directory

One of the most common questions to the AXYS Help Line is to request health care provider recommendations by geographical region. AXYS has promoted development of the Clinic and Research Consortium but also recognizes the need to maintain a listing of local providers for the X and Y Variation community. The directory is built by those who submit the name and contact information of providers who have shown interest and competence in gaining clinical expertise in X and Y variations. Providers submitted to the Professional Directory must be licensed in their state in their particular area of practice. AXYS cannot vet providers and cannot specifically recommend these professionals.

 

View a list of medical and other types of professionals who are known to provide services to those with an X or Y variation.

Submit the information of a professional to be added to the directory (Note: The submission will be added to the directory only after being reviewed by AXYS staff)

 

Please also be sure to always check the AXYS Clinic & Research Consortium (ACRC) page to see if there is a clinic within a reasonable distance of you.

Please inform AXYS via info@genetic.org if you become aware of any changes to the provider’s service.

­Disclaimer: AXYS maintains a directory of healthcare providers and education advocates as a service to the X and Y Variation Community.  These names are provided by members of the community.  AXYS makes no representations or warranties regarding their clinical competencies or specialized knowledge regarding sex chromosome aneuploidy. AXYS reserves the right to edit the submitter’s comments.

2024-08-22T14:27:46-04:00

Facial Recognition Study Details

One way to determine if each different type of sex chromosome variation has distinctly recognizable facial features is by using sophisticated facial recognition software. This distinction could, in time, lead to an earlier diagnosis.

Parents would be asked to submit electronic facial images of their children (affected children at different ages) and share their chromosome findings but no other protected health information. We would try to define the facial features for each type of sex chromosome variation and study the facial features over different ages, through a private online portal that could be made available to the support group.

This online portal includes an informed consent section, and directions for patients or their families to submit photographs. Affected boys and girls with extra sex chromosomes would be the primary study group. All submitted photos will be then transferred to the Face2Gene account of the geneticists or clinicians working with AXYS or the principal investigator for this study. Once sufficient numbers of photos have been submitted, FDNA would run an analysis on the different groups of photos to determine whether there are distinct gestalts and how these gestalts change over time. AXYS could share the portal’s online address and access code with your members, through the website, newsletter, social media, etc. We have set up such a portal for you to experiment with:

community.fdna.com/AXYS

Access code: cucumber

Families need to “sign” that they have read and understood the content of this page. If families do not wish to state their real names or email, they are also free to do so.

2020-07-10T15:14:09-04:00

AXYS News & Newsletters

2025-09-05T15:00:50-04:00

Fundraising Ideas

Thank You

Thank you for your continued support in looking for new ways to help support the crucial work that AXYS provides to our members and their families. Your generosity helps fuel our passion to raise awareness, support and advocate on the behalf of the children and adults with X & Y chromosome variations.


Ways to Fundraise for AXYS


AXYS is a non-profit organization that relies on donations by members to fund its outreach. Please help support our efforts by holding a fundraiser. Below are a number of popular ideas for fundraisers.  Want more information on a particular fundraising idea? Email us at info@genetic.org.

Fundraise for AXYS in 3 easy steps:
  1. Plan your event
  2. Hold your event
  3. Submit your donation form  →  AXYS Mail in Donation Form   |   XXYY Mail in Donation Form

• Golf Tournaments
• Bowl-A-Thons
• Wine & Cheese Parties
• Jewelry Parties
• Thirty-One Parties
• Pampered Chef Parties
• Bag Bingos
• Silent Auctions
• Live Auctions
• Texas Hold’em Tournaments
• Spaghetti Dinners
• Restaurant Fundraisers
• Facebook Fundraisers

• Dress Down Days
• Family Fun Days
• Barbecues
• Charity Runs/Walks
• Donations (in lieu of birthday presents)
• Recycling
• Garage Sales
• Bake Sales
• Pretzel Sales at sports games
• Gatorade & Water Sales at sports games
• Candy Sales at work
• Lemonade Stands
• Pledgling on Evite

Shop to Give

AXYS on CafePress

We have tees, hats, bags and more. 100% of the net proceeds will go directly to AXYS!

2024-10-16T13:23:51-04:00

Books

Living with Klinefelter Syndrome (47,XXY) Trisomy X (47, XXX) and 47, XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosome

Thanks to the generosity of the book’s author, Virginia Isaac’s Cover, MSW, AXYS is pleased to make this book available to the X and Y variation community, in its entirety, at no cost. Please feel free to download and/or print it for your personal use. (Those wishing to purchase a soft-bound copy can do so at Amazon or Kindle. All proceeds from the sale of this book benefit AXYS.)

2020-10-08T15:21:25-04:00

The Challenges of Klinefelter’s

“The Klinefelter Syndrome: Current Management and Research Challenges”—From the scientific journal, Andrology, this article summarizes the concluding “Round Table Discussion” of the 2nd International Workshop on the Klinefelter Syndrome in Munster, Germany, March, 2016. Topics include syndrome characteristics, centers of competence for diagnosis and treatment, counseling, support groups, early screening, fertility, testosterone treatment, and basic research. Click here.

See also: Speaker Abstracts from the 2nd International Workshop on Klinefelter Syndrome March 2016 Münster, Germany.

2022-02-17T13:35:25-05:00Categories: 47,XXY (Klinefelter)|

A Klinefelter Update for Pediatricians

“Advances in the Interdisciplinary Care of Children with Klinefelter Syndrome”—This nearly 30-page story in the journal Advances in Pediatrics is directed at pediatricians and family physicians who treat children, and who may thus come across patients with Klinefelter syndrome. It alerts them to the risks the condition carries for neurodevelopmental and psychological complications, and suggests that diagnosis rates are likely to spike sharply upward given advances in genetics and prenatal neonatal screening. Click here.

2018-04-27T16:40:23-04:00Categories: Featured Research Articles|

The Triple X Syndrome Phenotype

“Expanding the Phenotype of Triple X Syndrome: A Comparison of Prenatal Versus Postnatal Diagnosis” —This cross-sectional study was published in the American Journal of Medical Genetics. It describes the diagnosis, physical aspects, medical problems, and neurodevelopmental features in a large cohort of females with 47, XXX. Click here.

2018-04-27T16:40:32-04:00Categories: Featured Research Articles|

Exploring Klinefelter Syndrome

“The Impact of Living with Klinefelter Syndrome: A Qualitative Exploration of Adolescents and Adults” — This research article examines the medical, psychological, and social challenges that arise in individuals with 47,XXY as well as providing practical recommendations for parents and professionals on how to meet these challenges. Click here.

2025-02-20T14:54:05-05:00Categories: Featured Research Articles|

Webinars

See the link below for an archive of informative webinars featuring presentations by professionals in various fields relating to X and Y chromosome variations:

 Webinar playlist on the official AXYS YouTube channel


Conference and webinar presenters share their professional and personal opinions and experiences. These opinions and experiences are the presenters’ own and do not necessarily represent the AXYS organization.
2019-02-20T14:02:40-05:00
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