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There are many ways you can help children and their families get the care they need.
If your child has been diagnosed with fragile X syndrome, you may be feeling overwhelmed. Remember that seeking out information is not only necessary but empowering—it allows you to partner with your child’s care providers to make the best decisions for your child and your family.
Many families have been down this path and learned how to help their child manage and you will, too. Here at Boston Children’s Hospital, there are lots of ways we can help.
Fragile X is a genetic condition that can cause a range of learning and behavioral problems as well as physical issues, though these are usually less significant.
How Boston Children’s Hospital approaches fragile X
At Boston Children’s Fragile X Program, we focus on two things: providing care for patients and families affected by fragile X and carrying out research designed to better understand fragile X and develop better treatments for it. We also work with adults who are premutation carriers who may be affected by, or at risk for, early ovarian failure or fragile X-associated tremor/ataxia syndrome (FXTAS) to make sure that they get the right treatment.
Along with the multidisciplinary care offered through the Fragile X Program, our patients also have access to the broad range of resources available at Boston Children’s, including:
Our specialists maintain connections with all New England-based fragile X support groups. Your child and your family are in good hands here.
Reviewed by: Jonathan D. Picker, MD, PhD
© Boston Children’s Hospital, 2010
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”