Welcome to
NUS1 FOUNDATION
CONNECT + RESEARCH EDUCATE + CARE
At NUS1 Foundation, we are dedicated to making a difference in the lives of individuals affected by ultra rare NUS1 genetic disorders. Our mission is to connect caregivers, patients, researchers, and providers to build a community of hope that furthers treatment options. Through our collaborative efforts, we strive to advance medical research and improve the quality of life for those living with these rare conditions.
The Beautiful Faces of our NUS1 Family
Did you Know?
Our Ultra Rare NUS1 community spans the globe.
"When dealing with a rare disease, solidarity networks are more important than ever, they help keep those suffering from feeling alone and promote the sharing of experience and advice"
Pope Francis
Our Mission
The Focus of Our Efforts
Building Community
Building community for families is at the heart of our foundation. We believe that people, when brought together, can create networks of support that will help them thrive. Our goal is for the NUS1 Foundation to build those bridges so our families do not feel so alone.
Funding Research
The NUS1 Foundation is committed to funding research for the ultra rare NUS1-related genetic condition. We aim to use our resources to support science and research into the complexity of NUS1 genetic abnormalities.
Empowering Families
It is our belief that knowledge is power. With such a rare disease it is difficult to find information and answers to your questions. We hope the foundation will provide resources to educate and empower each family.
Staying Connected Has Never Been Easier
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How We Got Started
"As two mothers of children with this condition, our passion is driven by our own personal experiences. We know the importance of compassion, community, and access to reliable resources. It is our pleasure to play a role in connecting families, and providing resources for them to access information, support, and care." Andrea Johnson
Carissa Carman
