Dear ReNU Syndrome United Community,

As we embark on our first year of advocacy, support, and progress, we want to take a moment to express our heartfelt gratitude for your unwavering dedication and involvement. Your passion and commitment are the driving forces behind our mission to raise awareness, support research, and improve the lives of those affected by ReNU Syndrome.

This year, we have several exciting initiatives and events planned including our upcoming Family Conference in New York and the lanch of ReNU Syndrome Awareness Days in both the US and the UK. These efforts are only possible because of your continued support and participation.

We are working globally with scientists and researchers on the next steps to advance our understanding and treatment of ReNU Syndrome. In order to move forward, we must establish a comprehensive registry and conduct a natural history study. Your involvement in the Rare-X registry is crucial to these next steps, and you can learn how to join by watching this video. By contributing your experiences and data, you help us to advance research and move closer to finding effective treatments.

Thank you for being an integral part of our community! Together we can achieve great things and make a lasting difference in the lives of those affected by ReNU Syndrome.

With gratitude and renewed hope,

The Board of ReNU Syndrome United