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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 organize, fund and expand a clinical consortium that operates as independent clinics which collaborate with one another, share informational resources, and explore opportunities to participate in joint research projects. In addition, AXYS organizes annual meetings of the consortium where members meet to discuss topics important to the SCA community.

One goal of AXYS is to ensure that all families impacted by X and Y chromosome variations have access to the best available evaluation and treatments. The ACRC 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.

California

Los Angeles
Cedars Sinai Hospital: eXemplarY Kids Clinic
X and Y variations seen: All
Ages seen: Birth to age 21
Medical Director: Co-Directors: Yana J. Tavyev MD and B. Michelle Schweiger, DO, MPH
Appointments/Clinic Coordinator: TBA (please email B. Michelle Schweiger with any questions)
310 423-7779 (appointments) / 310-423-9935 (clinic coordinator) / 310 423-7940 (office)
Hospital website

Stanford
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

Colorado

Denver
Children’s Hospital Colorado: eXtraordinarY Kids Clinic
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 or extraordinarykidsclinic@childrenscolorado.org
Clinic website

Delaware

Wilmington
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

Georgia

Atlanta
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

Illinois

Chicago
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: Angel Wang
Appointments: Yasmin Roman, 312-942-3034

Maryland

Baltimore
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 a.m. – 6 p.m. EST)
Clinic website

Massachusetts

Boston
MassGeneral Hospital Klinefelter Syndrome Clinic
X and Y variations seen: Klinefelter syndrome (47,XXY), 47,XYY, 48,XXYY, 48,XXXY, and other male X and Y chromosome variations
Ages seen: Prenatal through adulthood
Medical Director: Frances High, MD, PhD and Frances Hayes, MBBCh, BAO
Appointments/Clinic Coordinator: Emma Snyder, 617-726-5521, esnyder2@mgh.harvard.edu
Clinic website

Ohio

Cleveland
eXtraordinarY Kids Care at Cleveland Clinic
X and Y Variations seen: XXY and other X & Y variations
Ages seen: Prenatal to young adulthood
Medical Director: Andrea Mucci, MD
Appointments/Clinic Coordinator: Stephanie LeMasters, 216-444-7987
Clinic website

Philadelphia
Children’s Hospital of Philadelphia: Klinefelter and All XY Variations Program
X and Y variations seen: All
Ages seen: Prenatal to young adulthood
Medical Director: Maria Vogiatzi, MD
Clinic Coordinator: Michelle McLoughlin, MSN, CRNP, CPNP-AC
Appointments: Meagan Snow-Bailey, 215-590-3174
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.

North Carolina

Winston-Salem
Wake Forest Baptist Medical Center, Department of Urology and Center for Reproductive Medicine
X and Y variations seen: 47,XXY, 48, XXYY and other male gonadal dysgenesis (Puberty and fertility preservation management for X and Y variations)
Ages seen: Children, adolescents and adults
Medical Director: Hooman Sadri-Ardekani, MD, PhD
Other faculty: Stanley J Kogan, MD and Stuart S. Howards, MD
Appointments: 336-716-4131
More information by E-mail: hsadri@wakehealth.edu
Clinic website