Welcome to the International Prader Willi Syndrome Organization (IPWSO) web site.  Our Global Family of parents, friends, and professionals has formed a dedicated partnership worldwide. We are committed to enhancing the quality of life for people with PWS and their families, giving our special children the best possible opportunities for living their lives to the fullest.

Currently, our international organization has 54 member and associate member countries, representing some 25,000 families.  Being a member provides many advantages such as the opportunity to be a part of a worldwide network of information involving professionals, and families.  Regional and international conferences are especially helpful in giving families the occasion to meet other families with similar challenges and to come together for educational workshops and lectures. Professionals are given opportunities for a universal exchange of research, experiences, and ideas.

Spreading awareness so children with PWS can have a brighter future is a major goal of IPWSO. Our educational packets (“General Awareness, Crisis, and Medical Awareness”) cover a wide range of essential topics and are distributed throughout the world in many languages.  Education promotes the possibility for early diagnosis and early interventions in medical and behavioral management. Wavelength, our newsletter which is published on this website, is filled with information about our member countries, the latest news on research and education, and information on conferences.

My name is Pam Eisen and I am the president of IPWSO. I am the mother of a beautiful, relatively slim, 24-year-old daughter with PWS. Although there have been many challenges in raising Gabriella, her innocence and unconditional love has brought much joy to our family. “Gabi” works with pride in a sheltered workshop, enjoys a myriad of activities, plays a keyboard, and is especially captivated with her tap and ballet classes. She says that when she dances, she is a star!

IPWSO is an organization without borders--open to people of all origins and cultures. Please check our website and see if your country has a national association.  If not, contact us and we will assist you in forming an organization and will connect you to other resources in your region, as well as throughout the world. We welcome you to join our global family!

Nations working together, sharing our resources and goals, IPWSO provides a beacon of hope for a better life for children with PWS and their families. With love and determination, all of our children can be “STARS!”

Welcome