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In 2015, the AXYS Board of Directors voted to approve funds to help develop the AXYS Clinic and Research Consortium (ACRC). This exciting development committed us to help organize, fund and build out a clinical consortium that will operate as independent clinics committed to collaborating with one another, sharing informational resources, and exploring opportunities to participate in joint research projects. In addition, AXYS organizes annual meetings of the consortium at which members meet to discuss topics important to the SCA community.

The goal of AXYS is to ensure that all families impacted by any of the chromosome variations have access to the best available evaluation, treatment or treatment recommendations. The AXYS Clinic & Research Consortium is an important means of achieving that goal.

For help in determining which clinic might be most appropriate for you or your family, please read the following and/or call us at 1-888-999-9428.

Types of Clinics

Due to the many X and Y Chromosome variations, not all clinics specialize in all conditions. Below is a listing of ACRC clinics. The specific conditions and patient ages served by the clinic are noted in the description.

Multidisciplinary Clinics

Some clinics are multidisciplinary in their services. A multidisciplinary clinic provides a comprehensive, integrated approach to caring for individuals. Patient visits are organized to provide access to all necessary medical, psychological, and therapy disciplines in one visit. Professionals then meet, discuss each case, then collaborate to develop a fully coordinated care plan tailored to the patient. Some clinics also provide “take-home” materials for local medical, therapy and school professionals. Please review each clinic’s website and/or description of its services for information regarding its specific approach to seeing patients. If unsure about the types of services provided, be sure to ask at the time an appointment is scheduled.

Los Angeles, CA (Southern California)
Cedars Sinai Hospital: eXemplarY Kids Clinic
X and Y variations seen: All
Ages see: birth-21
Medical Director: Co-Directors: Yana J. Tavyev MD and B. Michelle Schweiger, DO, MPH
Appointments/Clinic Coordinator: Margaret Au, MBE, MS, CGC Margaret.Au@cshs.org
310 423-7779 (appointments) / 310-423-9935 (clinic coordinator) / 310 423-7940 (office)
Hospital website

Stanford, CA (Northern California)
Stanford University School of Medicine
X and Y variations seen: All
Ages seen: Children and Young Adults
Medical Director: David Hong, MD
Appointments: Clinic Coordinator: Reiko Riley reikor@stanford.edu
Hospital website

Denver, CO
Children’s Hospital Colorado: eXtraordinarY Kids Clinic
X and Y variations seen: All
Ages seen: Birth to young adulthood
Medical Director: Nicole Tartaglia, MD
Clinic Coordinator: Susan Howell, MS, MBA, CGC
Appointments: 720-777-8361 or extraordinarykidsclinic@childrenscolorado.org
Clinic website

Wilmington, DE
Nemours Alfred I. duPont Hospital for Children: eXtraordinarY Kids Clinic
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
Clinic website  Clinic brochure

Atlanta, GA
Emory University: The eXtraordinarY Clinic at Emory University
X and Y variations seen: All
Ages seen: Birth to young adulthood
Medical Director: Amy L. Talboy, MD
Appointments: 404-778-1363 or 800-366-1502
Website

Chicago, IL
Rush University Medical Center
X and Y variations seen: All
Ages seen: Birth to young adulthood
Medical Director: Elizabeth Berry-Kravis, MD, PhD
Clinic Coordinator: Lindsey Wolf
Appointments: Dorothy Malecki: 312-942-4036

Baltimore, MD
Johns Hopkins: 47,XXY Klinefelter Syndrome Center
X and Y variations seen: Klinefelter syndrome. Male infertility.
Ages seen: Children and adults
Medical Director: Adrian Dobs, MD
Appointments: Hopkins USA Concierge Service: 855-695-4872 (Monday-Friday, 8 am – 6 pm EST)
Clinic website


Single Specialty Clinics

The following clinics primarily focus on a single issue associated with having an X or Y variation and may not necessarily provide the comprehensive evaluation and treatment recommendations provided by the multidisciplinary clinics. If you’re unsure about the types of services provided, be sure to ask at the time you schedule your appointment.

New York City, NY
Weill Cornell Medical College
X and Y variations seen: Klinefelter Syndrome and other SCA conditions related to Male Reproduction, Male Infertility, Varicocele, Low Testosterone, Sexual Dysfunction.
Ages seen: Children and adults
Medical Director: Darius Paduch, MD, PhD
Clinic Coordinator: Crismelly Ovale or Jasminda Alvarez
Appointments: 212-746-5309

Winston-Salem, NC
Wake Forest Baptist Medical Center, Department of Urology and Wake Forest Institute for Regenerative Medicine (WFIRM)
X and Y variations seen: 47,XXY, 48, XXYY (Puberty and fertility preservation management for X and Y variations)
Ages seen: Children, adolescents and adults
Medical Director: Hooman Sadri-Ardekani, MD, PhD, Stanley J Kogan, MD and Stuart S. Howards, MD
Appointments: Hooman Sadri-Ardekani, 336-713-1493, hsadri@wakehealth.edu
Clinic website