About Us
Mission Statement
To accelerate progress in rare disease research by connecting families, researchers, institutions, and resources, while building the systems and infrastructure needed to turn scientific potential into meaningful clinical progress.
Vision Statement
A future where every rare disease community is connected, informed, and supported by coordinated research systems that bring answers, treatments, and hope within reach faster.
The Grace Network for Rare Diseases
This work began with Grace.
After her diagnosis, we entered a world that, at first glance, appeared active. Foundations existed, researchers were publishing, and networks had been established. But it quickly became clear that activity was not the same as coordination, and information was not the same as access.
There were entire regions with no clear connection to the broader research ecosystem. In the largest and most populous states, it was often unclear how many patients existed, where they were being seen, whether their data was being collected, or if they were connected to any meaningful registry or study. Families were left to navigate this landscape on their own, without a clear entry point or map.
At the same time, there was no reliable place to get answers. Information was scattered across static websites, outdated summaries, and fragmented conversations. Communication between researchers, clinicians, foundations, and families was inconsistent at best. For most families, understanding the disease required months or years of independent effort; reading primary literature, tracking developments across institutions, and trying to separate signal from noise.
- The burden of learning, connecting, and organizing fell on the very people already carrying the weight of the diagnosis.
- What became clear was that the challenge was not a lack of effort. It was a lack of structure.
- Research was happening. Data was being collected. But it was not consistently visible, connected, or usable. Progress existed, but it did not move in a coordinated or reliable way toward a clinical trial.
- What started as an effort to understand and navigate one condition revealed a broader truth: this pattern exists across rare diseases.
The GRACE Network was built to address that gap.
It brings together Guidance, Registries, Alignment, Communication, and Execution to create a system where families can find answers early, where patients are visible within the research landscape, where data is structured for use, and where efforts across institutions move in a coordinated direction.
Grace made the problem visible.
The work now is to ensure that no family has to rebuild that understanding from scratch and that the efforts they begin can move forward with clarity toward real clinical progress.