Mental Health Awareness in Individuals with Prader-Willi Syndrome: Finding and Educating a Mental Health Professional (Part Two in a Series)

Finding a mental health professional who has experience working with individuals with Prader-Willi syndrome can be challenging.  The following are some suggestions to help you with your search:

  1. Talk to your primary care provider. She or he might be able to recommend one or more clinicians who are familiar with PWS.
  2. Call your state or local PWSA chapter if you have one. They might maintain their own list of mental health professionals in your area, or they can connect you with other members in your area who can provide some names.
  3. Contact PWSA | USA to see if they have names of any mental health professionals in your area in their database. You can also search for a provider on the website
  4. You might be able to find someone outside of your community who is willing and able to treat your child virtually. Keep in mind you might have to travel for the initial in-person visit if required.
  5. Talk to other parents whose children have PWS or other developmental challenges as they might be able to provide you with recommendations.
  6. If a child or teen with PWS is in need of a referral, check with the school psychologist who may be able to provide you with some possibilities.

Unfortunately, you might not find a mental health professional who has experience with PWS. In this situation, you can share PWS educational materials with the clinician you choose to work with your child. Some helpful resources can be found on PWSA | USA’s website:

  • Mental Health and Behavior Changes: When should parents seek help? By Dr. Janice Forster, MD and Linda Gourash, MD (The Pittsburgh Partnership) and Kathy Clark, R.N., M.S.N
  • The Mental Health of People with Prader-Willi Syndrome with Specific Focus on Mood Disorders and Psychotic Illness, by Tony Holland B.SC, M.B.B.S., M.R.C.P , M. Phil., F.R.C. Psych, University of Cambridge
  • Psychotic Medication Tip Sheet for Patients with Prader-Willi Syndrome for Health Care Providers, by Elizabeth M. Dykens, Ph.D, and Elizabeth Roof, M.A., L.P.E., Vanderbilt University, Nashville, TN


PWSA | USA can help set up a peer-to-peer consultation during which a clinician is connected to a psychiatrist or other mental health professional who has experience working with individuals who have PWS. Contact PWSA | USA’s Family Support team at (800) 926-4797 to make arrangements.

It can be very challenging and frustrating finding a mental health professional who has experience in working with children and adults with PWS who are facing a mental health challenge.  Stay encouraged and know help is never more than a phone call away.

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