Our Mission

The family of a child diagnosed with a rare disease should not have to become its own research team to understand what options may exist. Our family's experience with Delaney brought this problem into focus. With the news of her diagnosis still weighing heavily on us, we began the seemingly impossible task of searching for what happens after the hospitals have reached their end. That experience became the starting point for Rare to Scale.

Rare to Scale is a nonprofit initiative formed to help families find what comes next. We create a roadmap to access tailored treatments based off a person's genome. We link patients with companies that use advanced AI technology and autonomous labs which decrease time and costs that historically hindered advancements of N of 1 therapies. Our role is not to promise a cure, rather it's to help a family understand what new therapies may be possible, and how to get started.

The problem is far bigger than one family. Rare diseases affect more than 30 million Americans across more than 10,000 distinct conditions, and over 95% of them have no FDA-approved treatment. A rare disease diagnosis answers one question and creates a hundred more, and today families are left to navigate clinical literature, laboratory testing, regulatory pathways, and millions of dollars in potential research on their own.

Our own search only moved forward because of a chance introduction, a lucky connection that brought world-class science to Delaney's case. But navigating a life-altering diagnosis should never depend on luck, coincidence, or who a family happens to know. Rare to Scale exists to make that coordination standard: an accountable team behind every family, connecting clinicians, researchers, technology partners, and funding around each child.

We are independent by design. We do not manufacture therapies, sponsor clinical trials, or promise outcomes. Laboratory results and cell models give clinicians decision-support data, not guarantees, and an informed decision to wait, join a registry, or optimize supportive care is a success too. Clinical decisions stay with licensed treating physicians, always.

Our first milestone is a tightly managed 10-family pilot, proving that neutral, experienced coordination lifts the burden on families and eliminates administrative delay. Rare to Scale operates under the 501(c)(3) fiscal sponsorship of Forward Global, so every contribution is tax-deductible to the fullest extent permitted by law.