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.
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.
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, firstname.lastname@example.org Clinic website | Clinic brochure
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
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
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
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: Ashley Wong, MS, CGC, 617-398-0019, email@example.com For MGH Trisomy X care, call Medical Genetics at 617-726-1561 Clinic website
New York City Weill Cornell Medicine Klinefelter Syndrome Clinic, Weill Cornell Medical College X and Y variations seen: All Ages seen: Birth to young adulthood Co-Directors: Lilian Cohen, MD MPH (Genetics) and Peter Schlegel, MD (Urology) Clinic Coordinator: Lilian Cohen, MD MPH Clinic website
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
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.
Vancouver, British Columbia Flannigan Fertility – Reproductive Medicine X and Y variations seen: Male Infertility and Sexual Medicine. Genetic disorders leading to male infertility such as Klinefelter Syndrome, mixed gonadal dysgenesis (45X, 46XY), CFTR mutations leading to male infertility. Dr. Flannigan performs sperm retrievals, and fertility management. Ages seen: Post-pubescent adult population Medical Director: Ryan Flannigan, MD, FRCSC Appointments: Judy Chiu, 604-875-5003 More information by email: firstname.lastname@example.org Clinic website
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: email@example.com Clinic website