Connection is the best kind of medicine for parents. A RORA variant diagnosis can be overwhelming. We’re here to help you understand what it means from a parent’s perspective. Our parent network can help you navigate the grief, love, and confusion from our lived experiences.

This diagnosis feels like it changes everything, yet you are still the same fierce, loving parent. We hold space for the highs and lows that come with rare disease parenting and can offer the resources and networks that have supported our journeys.

Whether it’s a Zoom chat with RORA families or sifting through new developments with our research heroes, we can navigate this together. You don’t need to figure it all out at once - let’s take it step by step, together.