RARE-X Registry for NARS1 Families
Families: Click on the button to enroll in the Rare-X Registry!!
This will allow us to provide insight on NARS1 disease to researchers, doctors and each other to improve awareness and treatment options!
Why a Registry?
The more information we (parents/caregivers) provide:
The better we, as parents/caregivers, understand NARS1 disease to help our children and educate our doctors
The better researchers, doctors, and others, understand NARS1 disease
The more prepared we are as a community for clinical studies
RARE-X is a NONPROFIT created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing
RARE-X is a platform to collect, connect, and share data
RARE-X does not own, sell, or do research with the data they collect
Worldwide data collection that meets ethical standards
No cost to patients, organizations, or researchers
You own the health information you provide RARE-X
Your personal details are private
Researchers can access the de-identified health information you provide (de-identified = do not know who you are)
Speeds up research and drug development
This can help with our current research
Allow others (researchers, Pharmaceutical Industry, Doctors) to find out more about NARS1 disease