Tuesday, August 30, 2016

Clinics

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In 2015, the AXYS Board of Directors voted to approve the development of a consortium of clinics, organized, coordinated and funded, in part, by AXYS. Though each clinic operates independently, as members of a consortium they collaborate with one another, share informational resources, and have the opportunity 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 X and Y chromosome variation 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 and treatment or treatment recommendations. The AXYS Clinic & Research Consortium is one of the important ways we are 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.

Different Types of Clinics

Due to the many X and Y Chromosome variations, not all clinics specialize in all conditions. Following is a listing the clinics in the ACRC. 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 and 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.

Clinic Locations

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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: 215-955-1648, kkowal@nemours.org
Clinic website
 
Atlanta, GA
Emory University: eXceptional Kids Clinic at EmorY
X and Y variations seen: All
Ages seen: Birth to young adulthood
Medical Director: Amy Talbot, MD
Appointments: 404-778-8500 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: Erin Carmody
Appointments: Dorothy Malecki: 312-942-4036
 
Batimore, 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
 
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
 
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