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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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

Talks and Lectures

2020-11-10T16:21:06-05:00

Professional Advisory Committee

The following medical professionals have agreed to serve on the AXYS Professional Advisory Committee (PAC), charged with advising the AXYS board and staff on an as-needed basis:

Sharron Close, PhD (Chair), Emory University

Ricki Lewis, PhD, Adjunct Professor of Medical Education, Alden March Bioethics Institute, Albany Medical College

Susan Howell MS, CGC, MBA, Genetic Counselor and Coordinator, The eXtraordinarY Kids Clinic, Colorado Children’s Hospital

Jeannie Visootsak, MD, Developmental Pediatrician

Nicole Tartaglia, MD, Associate Professor, University of Colorado Medical School

Amy Talboy, MD, Emory University Department of Human Genetics

Sheryl Rimrodt, MD, Developmental Pediatrician

Ilene Fennoy, MD, MPH, Professor, Columbia University School of Medicine

Judith Ross, MD, Professor, Thomas Jefferson School of Medicine, Columbia University School of Medicine

Alan Rogol, MD, Pediatric Endocrinology University of Virginia (retired)

Adrian Dobs, MD, Professor, Johns Hopkins University School of Medicine

Robyn Robinson, CPNP-PC, Pediatric Nurse Practitioner and Parent/Advocacy Leader

Allan Reiss, MD, Robbins Professor and Director, Stanford University Center for Interdisciplinary Brain Sciences Research

Arlene Smaldone, PhD, CPNP-PC, Assistant Dean of Scholarship and Research, Columbia University School of Nursing

Lois Sadler, PhD, PNP-BC, FAAN Professor, Yale School of Nursing

Virginia Cover, MSW, MPH, Social Worker, Parent and Author

Eric Viliain, MD, PhD, Professor of Human Genetics, Pediatrics and Urology, University of California, Los Angeles

Kristy Martyn, PhD, PNP-PC, FAAN Professor of Nursing, Nel Hodgson Woodruff School of Nursing

David Marcus, PhD, Assistant Professor Neuropsychology Emory University

2024-07-06T11:59:45-04:00

Mortality in Patients with Klinefelter Syndrome in Britain: A Cohort Study

Article Title: Mortality in Patients with Klinefelter Syndrome in Britain: A Cohort Study

Authors: Anthony Swerdlow, Craig Higgins, Minouk Schoemaker, Alan Wright, and Patricia Jacobs

Date of Publication: December 1, 2005

“Patients diagnosed with Klinefelter syndrome have raised mortality from several specific causes. This may reflect hormonal and genetic mechanisms.”

Read more

2018-10-16T11:04:45-04:00Categories: 47,XXY (Klinefelter)|

Support Groups and Regional Get Togethers

AXYS supports our community with in person and online groups. These groups are facilitated by volunteers who schedule the programs and often arrange for speakers on topics of interest to individuals and families affected by X & Y variations. These groups offer the opportunity to share experiences with others and to learn about resources that they have found valuable. Some of our groups meet at AXYS Clinic and Research Consortium clinics. Other groups meet in libraries, medical centers, or parks.

AXYS has official online support groups for each variation. AXYS also shares information about other groups, both in person and online, that may be helpful to our community.

Registration for or indication to attend any AXYS event indicates your agreement to abide by the AXYS Activities Conduct Policy.

National Support Groups Serving All X & Y Variations

Our support group helps families who have been newly diagnosed, toddlers, kids, teens and adults living with X and Y variations. We currently offer education workshops with our local school districts, as well as community and education outreach. We also offer assistance with IEPs and Regional Center advocacy, provide support groups for all ages, hold an annual picnic, and support research through fundraising activities.

This group is currently transitioning to new leadership. For support in the Los Angeles area, contact info@genetic.org.

(DE, Washington, DC, MD, NJ, NY, PA, VA & WV)

Serving all X&Y chromosome variations

AXYS Mid-Atlantic Support Group on Facebook

Contact: Stefan Schwarz, sschwarz13@gmail.com

Next Support Group Meeting:

TBA

New York Area Support Group for X and Y Chromosome Variations
(XXY, XYY, Trisomy X, XXYY, XXXXY, Tetrasomy X, XXXY, Pentasomy X)

Contact: Avrin Slatkin, aslatkin@hotmail.com

NY Tristate KS/SCA Support Group on Facebook

Next Support Group Meeting:

TBA

This support group is for all X and Y chromosome variations.

Open to those within driving distance of Denver, Colorado, including those in Utah, New Mexico, Wyoming and Western Nebraska.

AXYS Rocky Mountain Support Group on Facebook

Support Group Meetings

AXYS Community Monthly Open House | 2nd Tuesday of the Month | Zoom

For a link to the Zoom meeting, please email Rob & Jamie Lee at axysrockymountain@gmail.com or contact them via the Facebook group: facebook.com/groups/axysdenver

Purpose: This group will provide support to those families and individuals with X and Y variations who are in search of more information in NC, SC, GA, AL, FL, TN, MS and KY. We will provide support group meetings at various locations in and around Atlanta, GA and occasionally have social events in more comfortable venues for fun for all.

Contact:  Dorothy Boothe, theboothefamily@yahoo.com

Next Support Group Meeting:

TBA

We’re starting a Texas Support Group for all ages and all X&Y variations.

Next Support Group Meeting:

TBA

Meets twice per year.

Contacts

Group Leader: Carrie Riby, carrieriby@gmail.com or 585-256-1638

Support volunteer for individuals with 47,XXY/KS: Caleb Donath, cbd021@gmail.com

Next Support Group Meeting

TBA

International Support Groups Serving All X & Y Variations

Contact and general information:

  • Support Group Name: Australian X & Y Spectrum Support
  • Service Area: Australia
  • Website: axys.org.au
  • Email: contact@axys.org.au
  • Condition(s) Served: (XXY, XYY, Trisomy X, Other, All) ALL
  • Meeting Schedule: Meetings will be announced as scheduled
  • Typical meeting Location: Sydney
  • The group also runs a “secret” Facebook support group: Australian X & Y Spectrum Support. This group is “secret” (a Facebook privacy setting) to protect members’ privacy.

Group mission:

  • To provide support and information to parents of individuals with sex chromosome variations including XXY, XYY and more
  • To provide support and information to individuals living with XXY (Klinefelter Syndrome), XYY and other sex chromosome variations
  • To provide awareness and information to education and health professionals and the wider community on sex chromosome variations; to advocate and lobby on behalf of our community

Support Group News:

Australian X & Y Spectrum Support (AXYS Australia) will have a conference on Saturday 10th November in Melbourne for all adults, parents, families, health professionals and educators linked to X & Y chromosome variants. There will be a variety of fantastic speakers.

For more information please email contact@axys.org.au.

The group currently serves 6 other families in Greece (individuals with XO, XXX, and XXY).
Group leader, Irene Simeonidou, provides info and translates documents for them.

Her comments:
We are planning to create a Greek organization (let’s call it support group) for families affected by X & Y chromosome disorders. But for now it’s just informal “meetings” through the Internet and friendly talking on the phone. We don’t have specific arranged meetings yet (we are working on it though).

I’ll create a Facebook page in Greek, and there will be a website, too. For the time being, there is only a Greek Facebook page for the rights of people with disabilities and special educational needs in Cycladhes, that I am running and checking every day, so I can also be reached there.

Service Area: All of Greece
Mailing Address: Syros, Kalamos Galissa
City: (Island) Syros
ST/Province: Cycladhes
Zip/Postal Code: 84100
Country: Greece
Leader Name(s): Irene Simeonidou
Leader Email Addresses: iren_simeonidou@yahoo.gr & dikaioma.kyklades@gmail.com
Phone: +30 6977660860 & +30 2281062198
Facebook group: facebook.com/groups/dikaioma.kyklades/
Conditions Served: All

Condition-specific Groups

47,XXY

AXYS XXY Klinefelter Global Support Group on Facebook

The AXYS XXY Klinefelter Global Support Group is managed by AXYS’s official Facebook group for XXY (to protect our members’ privacy, the group is members-only and requires members to sign up).

Klinefelter/XXY Support Rocky Mountain Region Facebook Group

Klinefelter’s Syndrome (47XXY) Support Group for the Rocky Mountain Region, including UT, CO, WY, ID, & MT. Adults and parents with KS kids are encouraged to join. 

Klinefelter’s Syndrome Association (KSA) is a KS/XXY-focused organization based in the UK.

From the KSA website:

“The aims of the KSA are:

  • to offer support and information to all affected by KS/XXY
  • to raise awareness of KS and XXY especially amongst the medical profession
  • to promote research into the management of KS/XXY

The KSA vision is of universal recognition, support and understanding of KS/XXY.”

KSA on Facebook | KSA on Twitter

AXYS Support Group for XXY
NEXXYS: Serving MA, VT, NH, ME, CT, RI, Upstate NY

NEXXYS Facebook Group

Contact: Martha Pepek, martha.pepek@gmail.com or Bill Mulkern, hume_rules@msn.com

Next Support Group Meeting:

TBA

Those interested in joining should contact AXYS by email: info@genetic.org

Our KS Sons Support Group:

The support group is for Parents of Young Adult 47,XXY Sons (18 and up). This virtual support group was started in September 2021 after one of the members attended the AXYS 2021 Virtual Family Conference and met other families with XXY sons around the same age.  We noticed our sons were beginning to transition from their pediatric doctors to “adult” medical doctors due to their age.

We currently have about 8 families in the group from NY, Colorado and California.  We have a Directory (which includes our name and cell number) for families that provide  consent to share their information.  We meet virtually via Zoom on the 1st Wednesday of each month at 6 pm Pacific Time (9pm Eastern Time). We welcome parents of young adults 47,XXY ages 18 and up.

Those partnered with adults with XXY share some common experiences.

Please join our Facebook group.

47,XYY

XYY Global Support Group on Facebook

All new members must provide verifiable identification before being admitted to this Facebook group.

Online support available via Website | WhatsApp | Facebook Group | Microsoft Teams | LinkedIn Group | Zoom

Contact: Jackie Gubbioli Bellocq | Email: 47XYYspain@gmail.com | Tel: +34629647334 | LinkedIn Profile

The primary language of this group is Spanish. Spanish-speaking persons all over the world are welcome to participate.

The aim of the 47XYY Spain group is to support affected individuals, their families, caregivers, and close friends by sharing, learning, and helping them with information, meetings, remote events, and webinars, etc. in Spanish. Our North Star includes having medical advice, active participation in clinical studies and trials, and legal support to help members to have better access to healthcare and social security funds, in Spanish. Our vision is a society where XYY individuals are diagnosed early, fully integrated, (academically, socially and professionally) supported, and recognized.

Póngase en contacto con Silvia Mann en silvia.valencia@gmail.com para ser agregado a el grupo de WhatsApp. Es dedicado a brindar apoyo a padres de familia de niños con variación XYY.

Website | Facebook | Instagram | WhatsApp

Contact: Roberta Zaffalon, info@sindromejacobsxyy.com, +39 340 7613170, all contacts

The group is now an officially registered APS (Association of Social Promotion) in Italy

Primary language: Italian (but we also welcome Italian speakers living abroad)

We operate nationwide, collaborating with clinics, doctors, researchers, and institutions across Italy

Mission
To improve the quality of life of people with Jacobs Syndrome (47,XYY) and related variations (48,XYYY – 49,XYYYY), ensuring integrated socio-healthcare and providing moral and psychological support.

Vision
A society where people with Jacobs Syndrome receive early diagnosis, are fully integrated, and recognized for their potential.

Who we are
We are a group of families from all over Italy, united by the desire to build together a path of growth and support.

What we offer

  • Support and guidance during and after diagnosis
  • Individual and group psychological counseling
  • Guidance on rights, school, and work
  • Support for families expecting a child with a prenatal diagnosis

Facebook Group

Area/region group serves: San Diego, CA

X and Y chromosome variation(s) group serves: XYY primarily, but will welcome other X and Y variations

Primary contact person:  Liz Claus, mrslizclaus@gmail.com, 619-339-1289

Frequency of meetings: quarterly initially but would like to increase to monthly based upon group interest

This is a group for parents/guardians of children with X and Y chromosome variations as well as for individuals who themselves have an X or Y chromosome variation. This group is intended to provide support and guidance as well as to provide avenues for friendships within the X and Y chromosome community. Over time, I would like to be able to have speakers come to talk about areas of interest to the group as well as provide family events.

47,XXX

Trisomy X/Triple X/XXX Global Support Group on Facebook

If you would like to request to join the group or simply talk, please message the administrator.

Next Support Group Meeting

Trisomy X Support Group – All Ages
August 24 @ 1pm EDT

We ask that all attendees please adhere to the AXYS Activities Conduct Policy.

The 4th Massachusetts Area States Trisomy X Support Group meeting.

4th Massachusetts Area States Trisomy X Support Group Meeting

Massachusetts Area States Trisomy X Support Group

“Taking it to the MaXXX”

Come Join Us

Contact: Joanne Burke, Parent of Jessica Burke (Trisomy X), age 19
Jomamaburke@comcast.net

Support Group News

Joanne Burke presents the 2019 Massachusetts Proclamation for X & Y Chromosome Variation Awareness Month

Joanne Burke presents the 2019 Massachusetts Proclamation for X & Y Chromosome Variation Awareness Month.


November 12, 2018

Dear Families,

Thank you for joining us this fall for the 4th Massachusetts Area States Trisomy X Support Group meeting. It was such a pleasure to welcome and meet some new Trisomy X girls and families. We had 10 girls/women with Trisomy X and families traveling from all different areas of Massachusetts. We started our meeting with round table discussions with Sharron Close, live from eXtraordinarY Clinic Department of Human Genetics and Pediatrics, Emory University School of Medicine. Many families asked questions and participated in the discussions.  We then met as a whole group, welcoming and introducing the girls and women with Trisomy X. The older girls/women with Trisomy X met privately with the younger girls to discuss any questions or issues that they may have. It was described as a “nice bonding experience among each other.” We had lots of great food and desserts. I would like to thank everyone for bringing food/drink items to share. I would like to thank Andrea for helping to organize the event and her endless support to our girls/women with Trisomy X.  Andrea also leads the Facebook Support group for only girls and women with Trisomy X. I would also like to thank Eileen, Jim, Kayla and Sunshine for helping with organizing the meeting, setting/cleaning up and bringing activities for the children. Lastly I would like to thank my family for assisting with planning the meeting especially my daughter Jessica. I was impressed with Jessica and the women with Trisomy X who came to the meeting on their own, willing to share their stories and answer questions. It is always heart warming to see girls and women with Trisomy X meet others with Trisomy X for the first time! These girls/women are amazing and beautiful in every way! Thank you to AXYS for their continued support and providing us with the latest information and research opportunities.

I am looking forward to our continued meetings. I am open to suggestions for group outings and activities to do together as well.  I have attached the contact list so everyone can reach out and communicate with each other.  Please feel free to reach out to me anytime and if you learn of new families please along their contact information.

Thanks again to each and everyone for coming and sharing your wonderful stories and support.

Our Best to All,
Joanne Burke and Jessica (Trisomy X age 19)

Trisomy X- A Group Just For Us on Facebook

This is a Facebook group exclusively for women and young adults with Trisomy X. Expect to be messaged by the administrator before your request to join the group is accepted.

48,XXYY

XXYY Parents and Caregivers Facebook Group

We are a group of Parents & Caregivers of boys/men with 48XXYY Syndrome.

If you request to be a member, you MUST be a PARENT or PRIMARY caregiver to an XXYY boy or man to be approved. You will receive 3 questions when you request membership that must be answered before being approved. If you need help with translating to another language, please contact an administrator of this group. Thank you!

48,XXXY

XXXY Global Support Group on Facebook

All new members must provide genuine answers to the membership questions before being admitted to this Facebook group.

48,XXXY Medical Syndrome Facebook Group

This group was developed for people who are associated with 48,XXXY Syndrome (aka 483xy). We would love to hear anything you have to share about this rare diagnosis!

Start an AXYS Group

Don’t see a group near your home? We will help you organize a group. You can get together one time or hold regular meetings.

Groups are started by committed volunteers. If you are interested in organizing a group, please send an email to info@genetic.org.

Reasons to consider forming a local group:

  • Create a network of people concerned about X and Y variations
  • Bring together the collective wisdom of people who have experienced similar challenges
  • Create a group that can make a difference in your community
  • Offer the lived experience perspective to legislators, the local medical community and educators

Some of the ways that AXYS will assist your local group include

  • Set up registration for the meeting(s) and collect donations to support the event(s).
  • Publicize meetings on the AXYS website, via blast emails, in our newsletter and on AXYS Facebook pages
  • Use of AXYS webinar software to hold virtual meetings or feature a remote speaker
  • Referrals to your group via AXYS’s Helpline and ACRC Clinics.

Many groups have found that a meetings with a speaker and group discussion, and social events such as picnics or meetings at restaurants work best to build a strong network. Current group leaders are happy to mentor new volunteers.

We look forward to hearing from you and having you fostering connections in your local AXYS community.

AXYS Support Group Guidelines and Confidentiality Agreement

2025-09-26T14:43:27-04:00

Videos

Videos

AXYS VideosThis chart contains all of the videos that are found on the AXYS YouTube Channel. This chart makes it easy to search for what you want to watch. To use the search this table box: type in the speaker, topic or condition for which you want to see videos.

Video

Speaker(s)

Relevant Variation

Supporting Academic and Social Emotional Education of Students with X and Y Chromosome VariationsAmy L. Talboy, MD, FAAP and Catherine Trapani, PhD, BCBAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
AXYS Clinic and Research Consortium Showcase + GALAXY Registry Updates with Dr. Shanlee Davis (2025)Shanlee Davis, MD, PhD et alXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
The eXtraordinarY Babies Study - Progress and Research FindingsNicole Tartaglia, MD and Kayla Nocon, MSXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
NIMH Intramural Research Program Study on X/Y Chromosome VariationsArmin Raznahan, PhDXXY, XYY, Trisomy X
X and Y Chromosome Variations and Fertility Options | Dr. Hooman Sadri (2025)Hooman Sadri, MD, PhDXXY, Trisomy X
Unpacking Social Emotional Challenges for Teens with XY Variations | Caitlin Middleton & Kate DeerCaitlin Middleton, PhD and Kate Deer, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
X&Y Chromosome Variations: Diagnosis, Terminology, and Next Steps Planning | Howell & Molison (2025)Susan Howell, MS, CGC, MBA and Kayla Molison, BAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Evaluation and Treatment of ADHD & Anxiety In Children | Dr. Caitlin Middleton and Ciara GurleyCaitlin Middleton, PhD and Ciara Gurley, MPAS, PA-CXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Initial Data from the GALAXY Registry: Generating Advancements in Longitudinal Analysis in X & Y Chromosome VariationsSusan Howell, MS, MBA, CGC and Kayla Molison, BAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Discovery & Exploration (discovering skills and employment opportunities)Tricia Zeltwanger, CESPXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
An Interview with Josh Griffin: His Experience with 47,XXYJosh GriffinXXY
Updates on the eXtraordinarY Babies Study (2023)Nicole Tartaglia, MD and Susan Howell, CGCXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Research Partnership: The GALAXY RegistryShanlee Davis, MD, PhD and Alexa Carl, MPHXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Gender identity, gender questioning, and gender dysphoria in KS/XXYClaire Harkin and Prof. James ElanderXXY
First Giggles to First Words (Language Skills)Michele Martinez-Chadrom, MA, CCC-SLPXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Temperament in Infants with X&Y Chromosome TrisomiesMegan Louderman, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Supplemental Needs: A Novel About X/Y VariationsGinnie Cover, MSW, MBAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Government Benefits (SSI, SSDI, SNAP, Medicaid, and more)Ginnie Cover, MSW, MBAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Gender Identity in Klinefelter SyndromeTet YapXXY
Understanding the Phenotypic Spectrum and Family Experiences of XYYRachel Gore, ScM, CGC and Colleen Jodarski, MGC, CGCXYY
Trisomy X: A Review and Care Update for Families and Health Care ProvidersKristen Wigby, MDTrisomy X
Social and emotional function in boys and teens with KSAllan Reiss, MD, Lara Foland-Ross, PhD, and Andrea Joan Funtila, BSXXY
Brain structure and function in boys and teens with Klinefelter syndromeAllan Reiss, MD and Lara Foland-Ross, PhDXXY
Diabetes in Klinefelter SyndromeAndrea Mucci, MDXXY
Finding Self AcceptanceMatt McKeon, MS, CCC-SLP & Hannah Acevedo, MS, LEP, ABSNP, BCBAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
State of Fertility in XY Chromosome Variations: What you should know in 2023Hooman Sadri, MD, PhDXXY, Trisomy X
How We Did It - Lessons from XXYY parents on how to get tractionNicole Tartaglia, MD and John SlossXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Anxiety in Children and Adolescents with X&Y Chromosome VariationsCaitlin Middleton, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Top 5 Parent Concerns about Executive FunctioningJennifer Janusz, PsyD and Ashley Nguyen-Martinez, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Dr. T’s 5 Main Areas to Consider When Deciding Whether to Start TreatmentsNicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Autism and X/Y Variations: How Do They Overlap?Nicole Tartaglia, MD and Rebecca Wilson, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
X- vs Y- Chromosome Influences on Human BehaviorSrishti Rau, PhDXXY, XYY
Get Moving! Strategies for Stimulating Motor Skills & Physical ActivityShanlee Davis, MD, PhD and Syd Martin, MS, OTR/LXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Beyond Hormones: medical conditions & physical symptoms in X/Y variationsNicole Tartaglia, MD and Shanlee Davis, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Why I Hired a Workforce Nobody Else WouldRandy LewisXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Exactly what do you mean by “developmental delay?”Nicole Tartaglia, MD and Talia Thompson, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Metabolic Issues in XXYB. Michelle Schweiger, DO, MPHXXY
Medical Problems and Medical Follow-Up in XXYY SyndromeNicole Tartaglia, MDXXYY
Adults’ Perspective on 47,XXYDavid Wright, Zell Lundberg, and David DavisXXY
Brain Development in Klinefelter SyndromeAllan Reiss, MDXXY
Cognition in Klinefelter SyndromeKyle Boone, PhD, ABPP-ABCNXXY
The Impact of Triple X Syndrome on Psychological FunctioningDrs. Marit BiermanTrisomy X
Getting Through the Day: The Impact of Klinefelter Syndrome on Psychological FunctioningDrs. Marit BiermanXXY
Clinical Characteristics and Modern Model of ManagementPeter J. Stahl, MDXXY
Health and Development in Trisomy X SyndromeNicole Tartaglia, MDTrisomy X
Testosterone Treatment of Adult Men with 47,XXYAdrian Dobs, MD, MHSXXY
Growth and Development in XXYY BoysRodolfo Rey, MDXXYY
Trisomy X Panel and Q&ARebecca Wilson, PsyDTrisomy X
Testosterone Replacement Therapy in Adult MalesJay Newmark, MDXXY
Infertility Treatment for Men with 47,XXYPeter Schlegel, MDXXY
Medical Problems and Medical Follow-up in XYY SyndromeNicole Tartaglia, MDXYY
Adult Curiosities and ConsequencesSharron Close, PhD, MS, CPNP-PC, FAANXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Quality of Life and Testosterone in Klinefelter SyndromeSharon Close, CPNP-PC and Ilene Fennoy, MDXXY
Health and Development in XYYJeannie Visootsak, MDXYY
Speech and Language Deficits in Klinefelter SyndromeNancy Lazerson, MA, CCC-SLPXXY
Mental Health: Issues and Challenges in XYYErin Torres, MSN, CRNPXYY
How to Keep Your Cool Around Disruptive BehaviorsTracy Prout, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
The Endocrinology of Klinefelter Syndrome Throughout ChildhoodDavid W. Cooke, MDXXY
2012 Survey Results: Living with 47,XXXVirginia Cover, MSWTrisomy X
Trisomy X Syndrome: An OverviewNicole Tartaglia, MD and Susan Howell, MS, MBA, CGCTrisomy X
Promoting Good Health in Adults with XXYAdrian Dobs, MD, MHSXXY
IEP and 504 Plans for Students with X and Y VariationsPeter Wright, EsqXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
2012 Survey Results: Living with 47,XXYVirginia Cover, MSWXXY
Development and Behavior in Children with X&Y Chromosome VariationsNicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
47,XXY: An Overview of What We KnowPhilip Zeitler, MDXXY
ADHD in X and Y Chromosome VariationsNicole Tartaglia, MD and Natalie AyariXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
AXYS Association for X and Y Chromosome Variations - Introductory VideoAXYSXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Auditory Processing and My Child with an X/Y Chromosome VariationJay Lucker, EDD, CCC-A/SLP, FAAAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Disclosing the DiagnosisSusan Howell, MS, MBA, CGCXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Your Child with 47,XXY: What to Expect During PubertyIlene Fennoy, MDXXY
The Cognitive and Behavioral Phenotype Of 47,XXY And 47,XXXSophie van Rijn, PhDXXY, Trisomy X
X&Y Chromosome Variations from Birth to Age 5Nicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Understanding Communication DisordersMatt McKeon, MS, CCC-SLPXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Klinefelter Syndrome - Developments in Research Regarding InfertilityPeter Schlegel, MDXXY
Dr. David Hong Reads Gregory and his Extra XDavid Hong, MDXXY
Epidemiology of Sex Chromosome AbnormalitiesClaus Gravholt, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Risk for Early Ovarian Failure in Girls with Trisomy X SyndromeNicole Tartaglia, MD, MSCS, Shanlee Davis, MD, PhD, and Susan Howell, CGC, MS, MBATrisomy X
47,XXY FertilityPravin Rao, MDXXY
The NIH Study on X and Y Chromosome VariationsArmin Raznahan, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Disclosing the Diagnosis in X and Y VariationsSusan Howell MS, CGC, MBAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Social and Emotional Functioning in Children with Klinefelter SyndromeLara Foland-Ross, PhD and Allan Reiss, MDXXY
Testosterone Therapy in Adolescents and Young Adults with 47,XXY Phillip S. Zeittler, MD, PhDXXY
Infants and Children with Klinefelter Syndrome: Hormones and DevelopmentIlene Fennoy, MDXXY
Research Aims: TRIXY National Center of ExpertiseSophie van Rijn, PhDXXY, XYY, Trisomy X
Making Medication DecisionsNicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
The Biology of Sexual Orientation and Gender IdentityEric Vilain, MD, PhD and Cisco Sanchez, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
2017 Aurora, CO Conference Keynote AddressNicole Tartaglia, MD and Sharron Close, PhD, MS, CPNP-PCXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Gene Function, Brain Development and BehaviorArmin Raznahan, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Brains, Genes, & Puberty: Testosterone Replacement in XXYAllan Reiss, MD & Vanessa AlschulerXXY
The NIMH Study on X & Y Chromosome VariationsArmin Raznahan, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Understanding the ABCs of Behavior in ChildrenElizabeth Coan, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Erin Torres Reads Elizabeth and her Extra XErin Torres, MSN, CRNPTrisomy X
Growth and Development in XYY BoysRodolfo Rey, MDXYY
Promoting Language and Learning: Children with X&Y Chromosomal VariationsNatalia A. Krum, BCBAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Transition to AdulthoodCory Nourie, MSS, MLSPXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Metabolic Syndrome in X and Y VariationsB. Michelle Schweiger, DO, MPHXXY
Fertility in X & Y Chromosomes Variations 2018Hooman Sadri-Ardekani, MD, PhD and Stanley Kogan, MDXXY
Sex And Gender: What the Data Tells Us About Klinefelter SyndromeAl Rogol, MD and Sharron Close, PhD, MS, CPNP-PCXXY
Online Safety for Individuals with X & Y VariationsLarry Dubin, JDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
eXtraordinarY Kids Research in ColoradoNicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Engaging the X & Y Chromosome Variation Community in ResearchNicole Tartaglia, MD and Shanlee Davis, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Reprise: Adults with XXYDavid WrightXXY
The Neuropsychological Evaluation and What It Can Tell ParentsDavid Marcus, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Secondary copy number variants in people with a sex chromosome trisomyHayley Mountford, PhDXXY, XYY, Trisomy X
Environmental Factors and Individuals with an Extra X ChromosomeSophie van Rijn, PhDXXY, Trisomy X
Dr. Nicole Tartaglia Reads Kyle and His Extra X and Extra YNicole Tartaglia, MDXXYY
Health and Fitness in X & Y VariationsShanlee Davis, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Government Benefits for Adults with Extra X & Y Chromosomes (2017)Virginia Cover, MSWXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Introduction + Presentation: Fertility in Klinefelter syndromePeter Schlegel, MDXXY
Independent Living: Life After High SchoolSharon HellerXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Streams of Development and Behavior in XXYJeannie Visootsak, MDXXY
College for those with learning differences in the X & Y variation communityRachel Masson and Ferne BorkXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Parental Advocacy for Children with Sex Chromosome AneuploidiesJordan P. RichardsonXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Successful Strategies for Home and Community ParticipationAudrey Zapletal, MS, OTRLXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Dr. Lilian Cohen Reads Jack and his Extra YLilian Cohen, MD, MPHXYY
Transition to AdulthoodCory Nourie, MSS, MLSPXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Psychiatric and Neurodevelopmental Comorbidities in XXYErin Torres, MSN, CRNP and Srishti Rau, PhDXXY
Understanding Executive FunctionsJennifer Janusz, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Navigating the Mental Health System: A Guide to Treatment OptionsDavid Hong, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Anxiety about COVID: Developing Resilience During a PandemicDavid Hong, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Behavior Problems, Temper Tantrums, Meltdowns and OutburstsKaren Riley, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
What Parents Need to Know About Their Child's DevelopmentAmy Talboy, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Understanding Language Development and InterventionsJacqueline Frazier, MA, CCC-SLPXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Social Skill Challenges, Toddlers to TeensRebecca Wilson, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Auditory Processing in Children With X and Y Chromosome VariationsJay Lucker, EDD, CCC-A/SLP, FAAAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
How to Talk to Your Child About His/Her DiagnosisNicole Tartaglia, MD and Rebecca Wilson, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Is There Androgen Deficiency in Childhood in Boys with 47,XXY?Judith Ross, MDXXY
Welcome to the 2019 AXYS Family ConferenceCarol MeerschaertXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Sex Chromosome Variation: Genes, Environment, Brain and BehaviorAllan Reiss, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
X&Y Chromosome Variations & Immune System HealthRam Raj Singh, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Neurodevelopmental and Medical Risks: X&Y Chromosome VariationsNicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Executive Functioning: How to Help Children with Challenging BehaviorLisa Jacobson, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
X&Y Chromosome Variation - New Views from Brain ImagingJay Giedd, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
The eXtraordinarY Kids ClinicNicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
A Roadmap for Advancing Knowledge and Clinical Practices (BGAP Study)Allan Reiss, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
AXYS Performance EventMichael PalumboXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Androgen Therapy for Male AdolescentsAlan Rogol, MD, PhDXXY
Heart Health in People with Klinefelter SyndromeFrances High, MD, PhDXXY
Executive functioning in adolescents with XXY: Results from the BGAP StudyVanessa AlschulerXXY
Seizure Management in X and Y Chromosome VariationsElizabeth Berry-Kravis, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Medications for Behavioral and Emotional Challenges in Children and AdolescentsNicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Educational Q&A - School's out! Now what?Hannah Acevedo-Schiesel MS, LEP, ABSNP, BCBA, Dorothy Boothe, PhD and Erin Frith, MEdXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
How Research Can Benefit Families and PatientsRebecca Wilson, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Intro + Presentation: Testosterone treatment in Klinefelter syndromeClaus H. Gravholt, MD, PhDXXY
Reprise: Adults with XXYZell LundbergXXY
Intro + Presentation: Early Intervention for Young Children with X&Y VariationsTalia Thompson, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Government Benefits for Adults with X and Y Chromosome Variations (2015)Virginia Cover, MSWXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Meet the AXYS Board of DirectorsVariousXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
AXYS Executive Director Carol Meerschaert talks about our 2021 Virtual Family ConferenceCarol MeerschaertXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Planning and Preparedness: Coping with Adversity and CrisisRhesia-Maria OchoaXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Clinical Trials in X and Y Variations: Doing Research that MattersShanlee Davis, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
What is Testosterone? What is TRT?Shanlee Davis, MD, PhDXXY
Growing Sperm in Nude Mice - From A Futuristic Dream to RealityAlex Travis, VMD, PhDXXY
Speech-Language Intervention: Goals and ExpectationsJackie Frazier, MA, CCC-SLPXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Living With Loss and GriefLori EarlXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
The Journey Through the Educational ProcessKaren Riley, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Neurodevelopment from Birth to Young Adulthood in X&Y Chromsome Variations (2015)Nicole Tartaglia, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Intro + Presentation: Conversation Skills for AdultsJasper Estabillo, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Working the Room: Advocacy You Can UseSharron Close, PhD, MS, CPNP-PC and Dorothy Boothe, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Research Updates in X&Y Chromosome Variations (2013)Nicole Tartaglia, MD, Sharron Close, PhD, MS, CPNP-PC, Ram Raj Singh, MD, and Jay Giedd, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Emotional RegulationLeela Morrow, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Sensory Processing Challenges and Participation in Home and School ActivitiesAudrey L. Zapletal, MS, OTR/LXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Legal and Law Enforcement Issues For Adolescents and AdultsPhyllis Quatman and Gary GlissmanXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
A Student’s Right: Tuition Reimbursement for Private SchoolTom Davis, EsqXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Latest findings & future plans from the NIMH study of X/Y chromosome variations (2021)Armin Raznahan, MD, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
How Did This Happen? Genetics 101Susan Howell, MS, MBA, CGCXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Endocrine Issues Related to X&Y Chromosome VariationsPhilip Zeitler, MDXXY
Depression: Diagnosis & Treatment in Persons w/ X/Y VariationAllan Reiss, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Tools for Teaching Social Boundaries to Tweens, Teens, and Young AdultsHannah Acevedo-Schiesel MS, LEP, ABSNP, BCBAXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Intro + Presentation: Physical Function, Psychosocial Health, QOL in XXYY IndividualsAmy A. Blumling, PhD, CPNP-PCXXYY
2015 State of the Science: Updates in X&Y Chromosome Variation ResearchPanel DiscussionXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Synchrony of Literacy Development Among Individuals with an Extra X ChromosomeMina Avery, MEdXXY, Trisomy X, XXYY, XXXY, Other Variations
Fertility and Ovary Function in Trisomy XShanlee Davis, MD, PhDTrisomy X
Work Incentives for People with Disability BenefitsDavid MitchellXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Practical Solutions for eXtraordinarY Circumstances (Part 1 of 2)Rebecca Wilson, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Prenatal testing for X&Y Variations (Extended Presentation)Rama Kastury, DOXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
How to Talk to Your Child about His or Her DiagnosisNicole Tartaglia, MD, Susan Howell, MS, MBA, CGC, Aaron Bornstein and Hillary EllisXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Roadmap to ResearchSharron Close, PhD, MS, CPNP-PC, FAANXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Supporting the Development of Planning and Organizational SkillsChrista Hutaff-Lee, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Introduction to the Americans with Disabilities ActDavid Knight, EsqXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Learning Problems: Viewed Through a Life Course LensSheryl Rimrodt-Frierson, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Patterns of Mental Health Risk in X/Y VariationsSrishti Rau, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
2013 AXYS Family Conference InterviewsVariousXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Occupational Therapy TreatmentSydney Martin, MS, OTRXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
When Others Don't Get It: Looking into the Future for X&Y Chromosome VariationsSharron Close, PhD, MS, CPNP-PC, FAANXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Whole Genome Sequencing and Genetic Counseling for X&Y Variations at NIHMichael Setzer, ScM, CGCXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Behavioral Considerations for X&Y Chromosome DifferencesRebecca Wilson, PsyD, E.G. Bozorgpour, PhD, and Jamie Blume, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Special Education and Disablility Advocacy: Sooner, Not LaterStephanie James, JDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Introduction to the new Clinical Registry, GALAXYShanlee Davis, MD, PhD and Susan Howell, MS, MBA, CGCXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Strategic Planning and Resources for Crisis Prevention and InterventionR. Maria Ochoa, LCSWXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Can We Direct Spermatogonia Toward Normal Development?Paula Cohen, PhDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Resources and What You Need to Know (Government Programs and Services)R. Maria Ochoa, LCSWXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Intro + Presentation: Coping with Anxiety DisorderDavid Hong, MDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Practical Solutions for eXtraordinarY Circumstances (Part 2 of 2)Rebecca Wilson, PsyDXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Literacy Development Among Individuals with X&Y Chromosome VariationsDonald Bear, PhD and Mina Avery, MEdXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Intro + Presentation: Transition from pediatric to adult-oriented medical careAndrew Dwyer, PhD, FNP-BC, FNAP, FAANXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
A Synchrony of Literacy Development Among Individuals with an Extra X Chromosome (Part 2)Mina Avery, MEdXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Prenatal testing for X&Y Variations Q&ARama Kastury, DOXXY, XYY, XXYY, Trisomy X, XXXY, Other Variations
Klinefelter Syndrome in Adults CME Course IntroductionCarol MeerschaertXXY
Klinefelter Syndrome in Adults CME Course: Lesson 1 | History, Prevalence, PhenotypeGary Glissman, RNXXY
Klinefelter Syndrome in Adults CME Course: Lesson 2 | DiagnosisHooman Sadri, MD, PhDXXY
Klinefelter Syndrome in Adults CME Course: Lesson 3 | Physical and Mental Comorbidities David Hong, MDXXY
Klinefelter Syndrome in Adults CME Course: Lesson 4 | Multidisciplinary Health ManagementSharron Close, PhD, MS, CPNP-PC, FAANXXY
Klinefelter Syndrome in Adults CME Course: Lesson 5 | Fertility TreatmentStuart Howards, MDXXY

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.

2025-10-09T11:49:30-04:00Tags: |

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