Children with rare genes have dreams too.
7,000+ Rare Diseases — Each One Matters
There are over 7,000 identified rare diseases across the globe.
Each represents a unique story, a family seeking answers, a community striving to be seen.
Rare diseases affect 400 million people worldwide — more than the entire population of the United States.
In the U.S., a disease is classified as rare when it affects fewer than 200,000 people.
But together, rare is not so rare.
No Roadmap? No Problem
A real-world guide for parents navigating a rare diagnosis — written by a mom who’s lived it.
When you’re first handed the word rare, it can feel like your world stops. This free guidebook was created to offer a starting point — not a playbook, but a hand to hold.
Whether you're newly navigating a diagnosis or supporting someone who is, we hope it helps you feel seen, steadied, and supported.
Download the guide and take your first brave step forward.
A rare genetic disorder is much like a kaleidoscope.
One piece changes the entire picture.
Our Path Forward
Awareness
Raising awareness of the significant impact rare genetic disorders have on individuals & families — and also highlighting the gaps in support.
Earlier Detection
Promoting earlier detection of rare genetic disorders through information sharing, advocacy, and partnerships.
Empowering Families
Providing families with encouragement, information, and connections so they never feel alone.
Meaningful Support
Turning awareness into practical support, resources, and connections that help families today.
Collaborative Care
Encouraging collaboration between families, healthcare providers, educators, and communities to improve outcomes.
Access to Resources
Helping families connect with programs, services, and organizations that provide financial or practical assistance.
Make an Impact.
Join us in raising awareness, empowering families, and building brighter futures for those living with rare genetic disorders.