Fueled by hope.
United by purpose.
What We Do
ReNU2 United fosters collaboration, supports families, raises awareness, and advances research into RNU2-2-related neurodevelopmental disease.
Unite families. Raise awareness. Advance research — all of us, for each of us.
Where We're Going
A world where every family touched by RNU2-2 has access to appropriate testing, informed medical care, and a community that surrounds them with resources and hope — while we relentlessly pursue the treatments that will change their lives.
What We Stand For
How We Create Change
RNU2-2 is newly discovered. The science is moving fast. Here is how ReNU2 United is working to ensure that progress reaches every family — as quickly as possible.
What We Believe
RNU2-2-related neurodevelopmental disorder is newly discovered, and the vast majority of people living with it remain undiagnosed — not because it is rare, but because awareness is nearly absent and the only path to diagnosis is whole genome sequencing, a test most families are never offered and rarely know to ask for. We believe diagnosis changes everything: it ends years of uncertainty, connects families to appropriate care, and opens the door to research participation. We believe that researchers working together move faster than researchers working alone. And we believe that families who find each other heal faster, advocate more effectively, and become essential partners in the science.
Our Strengths
ReNU2 United brings together the people, knowledge, and community infrastructure this disorder requires.
Our Work
The Path to Change
From where we are today to the world we are building toward.
- Families connect, share information, and find the right specialists and therapies
- More clinicians recognize RNU2-2 and know what to look for
- More individuals receive a correct diagnosis, ending years of uncertainty
- Researchers who worked independently begin to coordinate
- The diagnostic journey shortens for newly presenting patients
- A critical mass of research gets underway, guided by patient registry data
- Families become active partners in the research process
- RNU2-2 is recognized as a defined clinical entity with established care standards
- Medical teams across specialties are prepared from the moment of diagnosis
- Clinicians routinely order whole genome sequencing for children with unexplained neurological symptoms, and RNU2-2 is added to the targeted gene panels and whole exome sequencing tests more commonly offered today
- A treatment that reduces seizures and/or halts disorder progression is available for people with RNU2-2
A child born with RNU2-2 ten to fifteen years from now is diagnosed at birth or shortly after — before the hardest years, before the seizures go unrecognized, before families spend years in the dark. Their medical team knows what they're dealing with. Their family finds community immediately. And a treatment is available that changes the course of what this disorder can do.
That is what we are building toward. Every family connected, every researcher convened, every dollar raised is a step on that path.