Beckwith-Wiedemann Syndrome (BWS) is a rare genetic disorder. For certain types of BWS, up to 25% of children will develop cancer, most commonly liver and kidney cancer. We are participating in Alex's Million Mile to help move us closer to finding a cure for all children with cancer. Thank you for your support!

Funds from the Team BWS will support the following:

• New research projects – We are currently working to understand more about the transition between normal growth, overgrowth and tumors. We are also continuing to improve clinical care for children with BWS.  If you are interested in learning more or participating in our new research projects, please email us at [email protected].
• BWS Educational Material – Educational material can be found on our BWS Educational Website and includes BWS information sheets discussing the diagnosis, genetic causes, and management of BWS and the BWS educational coloring book. These educational materials are available in multiple languages.
• BWS Registry – This registry includes hundreds of families from across the US and around the world. The registry is a tool to collect information about BWS which then allows us to develop better ways to treat individuals with BWS. Specifically, we were able to use information from the registry to write international tumor screening guidelines. We have also been able to connect families with local specialists and with nearby families for support. If you are interested in learning more or joining the registry, email us at [email protected] or visit our BWS Registry website.
• International BWS Conference 2025 – Every two years we host an international clinical research conference for professionals and families. This provides us with an opportunity to share the work we have done on both the clinical and the research side. This conference helps raise awareness about BWS as well as allow families to meet each other and share their stories. Our next conference is in Philadelphia July 18-20, 2025.
• Other genetic disorders including WAGR Syndrome and Simpson-Golabi-Behmel Syndrome – Our latest research project analyzes the largest cohort of patients with WAGR syndrome with the goal of creating a better understanding of the clinical characterizations and symptoms of WAGR syndrome. Ultimately, this work will guide more tailored recommendations for how to care for patients with WAGR syndrome. We are also starting to characterize the clinical features and tumor risk in Simpson-Golabi-Behmel syndrome, an overgrowth syndrome with similar features to BWS.

Recent publications:

• We are excited to share our new BWS Publications website! On this site, you will find a list of recent publications about BWS and family-friendly summaries of the research. The family summaries provide a brief overview of each publication including background information, overall purpose, key findings, and conclusions.

Find out more about our BWS Heroes here!