The Foundation for Prader Willi Research (FPWR) welcomes you and your family to join a group of supportive and highly motivated parents, researchers, and professionals working together to eliminate the challenges of Prader-Willi syndrome.
You may have recently received a diagnosis of Prader-Willi syndrome for your child or loved one, or maybe you are just finding us on your journey, and are ready to reach out for guidance. Please join us in taking your “First Steps” following a diagnosis! We are a small group of parents of children with PWS that have been where you are right now. Our journeys are all a little different, but we have all been in your shoes.
We will guide you through the “First Steps” to take. You are likely feeling overwhelmed, and worried about what your child’s future might hold. This is completely normal, and it will get better. We are here to help you, to answer any questions you might have, to give you support, and most of all to tell you that there is great hope in your child’s future.
We invite you to contact us. By sharing some basic information, you will be granted access to a wealth of current, informative documents, as well as photos and videos of our children with PWS. You will be invited to attend monthly phone conferences with parents, medical and research professionals.
We are so glad you have found us, and extend a heartfelt welcome to our community.
Get started and receive your First Steps booklet for newly diagnosed parents (your information will not be shared outside of our organization).