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The Turner syndrome clinic provides compassionate care with a multidisciplinary approach. We are a subspecialty program, which means that we do not serve as primary care, but instead we provide each patient with a comprehensive evaluation, specific to the needs of people with Turner syndrome. In turn, our doctors work with the patient’s primary care provider to identify specialty needs, to coordinate care, and to improve outcomes. Our clinic was inspired by a wish to help those with Turner syndrome obtain resources important to their well being at a single institution.
We listened to our patients and their families who felt a clinic model was essential to optimal care. Additionally, we think of our clinic as a wellness center to emphasize that people with Turner syndrome are generally healthy but have ongoing medical needs. We welcome, in particular, patients who have not found a “Turner syndrome medical home” and we provide care across the lifespan.
With joint leadership between Medical Genetics and Pediatric Endocrinology, we have assembled a multidisciplinary team of medical, surgical, and mental health specialists.
Dr. Angela E. Lin, MD, Medical GeneticsDr. Lynne L. Levitsky, MD, Pediatric EndocrinologyDr. Frances J. Hayes, MD, Reproductive Endocrinology
On the day of your clinic visit, you will meet with several providers. You will also receive our photo directory to keep track of the many faces of our clinic.
In order to provide up-to-date care for people with Turner syndrome, we follow the 2017 Clinical Practice Guidelines established by Claus Gravholt, MD, PhD, and collaborators (including clinic co-director Angela Lin, MD.) Additionally, we help our patients and families appreciate the value of a care plan so that they may effectively coordinate with various healthcare providers as they grow older. Our patients are able to develop an ongoing relationship through periodic visits to our clinic. Dr. Lin (Genetics) and either Dr. Levitsky (Pediatric Endocrinology) or Dr. Hayes (Reproductive Endocrinology) serve as the first points of contact. Referrals are then made to other providers. In some instances, we can schedule a few additional appointments on the same day, but generally, we need the first visit to get acquainted.
We work as a team to help those with Turner syndrome and their families transition from prenatal consultation to infancy to adolescence, and through adulthood and their senior years. Our approach is customized to the age of the patient and their specific needs.
With joint leadership between Medical Genetics and both Pediatric and Reproductive Endocrinology, we have assembled a multidisciplinary team of medical, surgical, and mental health specialists, including:
For more information or to request an appointment, please call (617) 726-1561.
Research provides physicians and the Turner syndrome community a better understanding of various aspects of TS. We value the opportunity to do research in our pursuit of better care options for people with Turner syndrome.
Angela Lin, MD, Medical Genetics
Lynne Levitsky, MD, Pediatric Endocrinology
Frances Hayes, MD, Reproductive Endocrinology
Jones, K. et al (2018). Dual diagnoses in 152 patients with Turner syndrome: Knowledge of the second condition may lead to modification of treatment and/or surveillance. Am J Med Genet Part A. 2018: 1-11.
Levitsky, L. et al (2015) Turner syndrome: update on biology and management across the life span. Curr Opin Endocrinol Diabetes Obes. 22(1): 65-72.
Prakash, S. et al (2016). Autosomal and X Chromosome Structural Variants Are Associated with Congenital Heart Defects in Turner Syndrome: The NHLBI GenTAC Registry. Am J Med Genet A. 2016, 170(12): 3157-3164.
Proposal for a national registry to monitor women with Turner syndrome seeking assisted reproductive technology (Lin et al, 2016)
Gravholt, C. et al (2017). Clinical practice guidelines for the care of girls and women with Turner Syndrome. European Journal of Endocrinology, 177(3): G1-G70. – This article was based on the 2016 Cincinnati International Turner Syndrome Meeting. Dr. Angela Lin, a doctor at MGHfC, helped write these guidelines. The article is written in medical language, but your doctor would be happy to talk about it at your child’s clinic visit.
Our new research assistant, Emma Snyder, joined the team in August of 2018. In her role, she coordinates the advancement of our current research project on Turner syndrome mosaicism. She interacts with patients on the phone and in clinic to discuss the project, and to ensure informed consent is given by those who wish to participate in the study. She also maintains our research database, stays up to date on ethical research practices, and writes our periodic clinic newsletter. Emma is happy to be a part of the team and looks forward to learning from and with clinicians and patients.
Turner syndrome is a genetic condition that affects only girls and women. It is caused by a missing or partial X chromosome. This condition may lead to different medical problems, including reduced height, late puberty, infertility and heart problems. Not every person has the same problems. Most people with Turner syndrome lead healthy lives with regular medical care and education.
Turner Syndrome: What You Need to Know
Turner Syndrome | Español |한국어
Turner Syndrome Mosaicism
Keeping in Touch With Your Doctor and Care Team
Preparing for Your First Appointment
In addition to our in-house education materials, we endorse the following groups and resources:
Turner Syndrome Society of the United States (TSSUS)– The TSSUS website describes common medical problems associated with Turner syndrome. It also offers a directory of doctors familiar with Turner syndrome, FAQs reviewed by a group of experts, and the chance to connect with others touched by Turner syndrome.
Turner Syndrome Global Alliance (TSGA)— The Turner Syndrome Global Alliance seeks to “connect science, resources, and funding to the Turner Syndrome community.” They hope to educate the medical field on the importance of including Turner syndrome in genetics research pursuits.
Boston International Turner Syndrome Summit— An annual summit for individuals with Turner syndrome ages 12-19, meant to provide enriching experiences that foster independence and community.
U.S. National Library of Medicine: Turner Syndrome
National Human Genome Research Institute: Turner Syndrome
Transition Self-Assessment (from the Endocrine Society)
Massachusetts Rehabilitation Commission (MRC)— The Massachusetts Rehabilitation Commission helps individuals with disabilities to live and work independently.
At your visit to the TS clinic, we are happy to provide additional referrals and resources related to career development and professional skills development.
The Turner Syndrome Society of the US (TSSUS) hosted the annual family conference in Cincinnati, Ohio, July 22-24, 2016. The theme was approaching health care as a team. Dr. Angela Lin presented talks entitled, “Genetics 101: An Introduction”, and “Health Care Game Plan.”
Rosie Mahoney has Turner syndrome, but doesn't let it stop her from dreaming big. With help from the Turner Syndrome Clinic at MassGeneral Hospital for Children, Rosie develops the skills she needs to achieve her dreams.
Boston Globe article profiles Miriam Beit-Aharon, a patient in the MGH Turner Syndrome Clinic, whose mother, Claudette, edited a collection of essays of women living with Turner syndrome. The article mentions Co-Director Dr. Angela Lin, and her interest in the use of IVF for women with Turner syndrome.
Opened in October of 2011 under the leadership of medical geneticist Angela Lin, MD, and Lynne L. Levitsky, MD, chief of pediatric endocrinology at MassGeneral Hospital for Children (MGHfC) and joined by reproductive endocrinologist Frances Hayes, MD, in 2013, the Turner Syndrome Clinic at MGHfC provides comprehensive evaluation and individualized care for newborns, toddlers and adolescents with Turner syndrome.
Turner Syndrome Clinic
Yawkey Center for Outpatient Care
To schedule an initial evaluation (your first appointment with our clinic), please contact our Patient Services Coordinator at 617-726-1561.
If you have already been seen in our clinic and would like to schedule a follow-up specialty appointment (for example, endocrinology, cardiology, etc.), or would like to schedule one on the same day, our patient services coordinator will assist you in contacting them. Understandably, different specialty clinics may meet on different days.
Physicians may call 888-644-3211 or use the online referral form and the Access & New Appointment Center will call your patient within 1 business day.
Please see visitor information for driving directions, a map of the hospital, hotels (PDF), dining options and more.
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