The GRACE Network
For Rare Disease
A foundation focused on advancing early-stage science, building research infrastructure, and connecting the rare disease ecosystem.
- We understand the system
- Here’s what’s broken
- Here’s how we fix it
Focused Strategic Impact-Driven
Research Funding
Supporting early-stage scientific breakthroughs
Therapeutic Advancement
Accelerating gene therapy and platform innovation
Infrastructure Development
Building systems that enable progress at scale
Ecosystem Collaboration
Connecting researchers, institutions, and families
Our Origin
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.
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.
What We Do
Driving transformative change through targeted investments that unlock progress across the rare disease ecosystem
Guidance
Helping organizations navigate rare disease challenges strategically.
Registry
Creating systems for better patient data organization.
Alignment
Connecting researchers, foundations, and stakeholders.
Communication
Ensuring everyone stays informed and coordinated.
Execution
We Execute what we commit.
Guidance
Helping organizations navigate rare disease challenges strategically.
Registry
Creating systems for better patient data organization.
Alignment
Connecting researchers, foundations, and stakeholders.
Communication
Ensuring everyone stays informed and coordinated.
Execution
We Execute what we commit.
Together, We Can
Accelerate Rare Disease
Progress
Get Involved
Partner With Us
For Donors
Support high-impact initiatives that drive meaningful
progress in rare disease research and care.
For Researchers
Access funding, resources, and collaboration
opportunities to advance groundbreaking work.
For Partners
Collaborate with us to build scalable solutions
and strengthen the rare disease ecosystem.
People worldwide are
living with a rare disease
Identified rare diseases across genetic and acquired conditions
Of rare diseases
begin in childhood
Lack an approved
treatment
Why It Matters
The Rare Disease Research Landscape — And the Gap We Intend to Fill
Rare disease research is often carried forward not by large institutions, but by parent-led foundations. These organizations do extraordinary work. They raise the early dollars. They build community. They connect with scientists. They fund pilot studies, seed grants, registries, and natural history work. In many cases, they are the reason research exists at all. But most of them are operating with limited staff, limited time, and limited infrastructure. They are trying to fund science while also answering family emails, updating websites, explaining research papers, organizing events, and keeping donors engaged. That is a heavy lift for organizations usually built by families already carrying a heavy burden of caring for a child with a rare disease.
Contact
Contact
Connect With Us
We welcome inquiries from donors, partners, and researchers interested in advancing rare disease progress. Reach out to explore opportunities for collaboration.