Prader-Willi Syndrome Treatment & Management

  • The Children’s Institute of Pittsburgh decided several months ago, for a variety of reasons, that it was the right time to assess our Center of Excellence for individuals with Prader-Willi syndrome (PWS). As part of this process, our priority was to involve the PWS community in a meaningful way in shaping our services.

    We’re pleased to report that we received 414 completed surveys from parents and caregivers, staff, and schools supporting children with PWS, along with PWS clinics, providers, residential facilities, and service agencies. Thank you to those who provided feedback, especially the 250 parents/caregivers who took the time out of their busy schedules to participate.

    One of the key findings of the survey indicates there is a demonstrated need in the community for PWS services, including an intensive program with inpatient services. Working in partnership with all stakeholders, we’re excited to evolve our program to best serve and meet the needs of individuals with PWS.

    Specifically, we are pleased to announce we will be offering a Care Coordination program starting in August. This program will increase our ability to meet the needs of a broader population of persons with PWS across the country.

    In the meantime, we will continue to offer consultation services in education, nutrition, and training both locally and nationally. Also, we will continue to share our expertise in a series of  educational training modules delivered live to schools, residential facilities, and other professional organizations.

    But there is more to be done. In particular, our dedicated team continues to work on the development of a sustainable intensive PWS program, including an evaluation of inpatient and outpatient services. We also are meeting with parents and caregivers to understand better how we can help with advocacy efforts. For more information, contact administrator Amy McTighe.

    Again, thank you for your invaluable feedback that is already beginning to shape our programs and services for individuals with Prader-Willi syndrome!

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