New Diagnosis

helping you through your journey.

Learning that your child has a rare genetic disorder is certainly venturing into the unknown and can feel overwhelming, and educating yourself about Prader-Willi syndrome will give you a better roadmap and empower you to make the best decisions for your child and family. You’ve already taken the first step by visiting our website. Here you will find information to help you learn how to manage any symptoms of Prader-Willi syndrome your child may have. PWCF is here to help you through every step of your new journey.

Your New Journey

Our website is one of many tools at your disposal. We encourage you to explore the website, come to a support group meeting or other event so you can meet other families and become a member so you’ll always have latest information on Prader-Willi syndrome.

Get Information

Explore the Parents section of this website, especially the section for the age of your child. Call us with any questions or if you don’t find what you’re looking for. Join PWCF to stay informed about the newest information about treatments and statewide events and activities. Contact the national Prader-Willi Syndrome Association | USA to request their Package of Hope.

Connect with Other Parents

Because we know how helpful it can feel to speak with someone who really understands what you’reexperiencing, we can connect you with other parents to the extent you feel comfortable. We maintain a Parent Mentor Program and can connect you with a parent of a child of similar age or even in your city. We host quarterly Parent Sharing and Information Exchange Groups on Zoom, organized by the child’s age, that are open to all PWCF members. And as soon as we’re able we will host in-person share groups once again. Just let us know how you’d like to connect! We also encourage families to join one of PWSA | USA’s Facebook groups; just contact PWSA | USA directly at 800-926-4797 or info@pwsausa.org.

Learn About Growth Hormone

Growth hormone therapy (GHT) is now the standard of care for treating the symptoms of growth hormone deficiency in children caused by PWS. While GHT is not a cure for Prader-Willi syndrome, it is a treatment to reduce many of the syndrome’s physical symptoms and therefore may be the right journey for your child. Review the information on Growth Hormone Therapy under the Parents tab and elsewhere on this website.

Start Appropriate Therapies

Infants and children with Prader-Willi syndrome benefit significantly from various therapies including the “core therapies” which are occupational therapy, oral-motor therapy, physical therapy, oral motor therapy in infancy, and speech and language therapy as your baby ages. Other therapies, including infant stimulation therapy, vision therapy, and later, social skills therapy, may also be helpful. Services will vary depending upon your child’s unique needs.

Find an Endocrinologist

The symptoms of Prader-Willi syndrome are caused in part by issues related to the endocrine system,therefore physician who specializes in Endocrinology is an appropriate specialist who can prescribe growth hormone medication and monitor your child’s progress. Click here for PWCF’s Clinics and Physician Referral List to find an endocrinologist who is knowledgeable about PWS.

You are not alone

PWCF is here for you.

PWCF believes it is often from other parents where we can learn the most. Our Board of Directors, staff, and volunteers are primarily comprised of parents and family members of a loved one diagnosed with PWS. We’ve journeyed where you’re about to journey. We are here to support you every step of the way.

Without PWCF I would feel so alone. Because of the organization’s support I’ve learned so much. I believe change is possible. And I believe I know a lot better how to help my son live his best life for a happy future.”

-Antonia