ReNU syndrome is a spliceosomal disorder with a defined mutational hotspot and growing global dataset, creating a uniquely actionable opportunity for therapeutic development.
“It is remarkable that around 100,000 individuals globally who are predicted to have ReNU syndrome have DNA changes in just 13 of the over 3 billion base-pairs of our genetic code!”
Register Here
There’s strength in numbers! Share your rare: add a ReNU loved one to the map or gallery to raise awareness
Donations
Promoting research, building community, and spreading awareness...there's still lots to learn and the sky is the limit!
Research
Participate now to accelerate research and the development of new drugs, devices, or other therapies!
More Information
Learn about how ReNU occurs, typical features and characteristics, how development is affected, and why this was only recently discovered!
Parent Connection
You’re not alone! ‘ReNU’ hope and find community with ReNU Syndrome parents worldwide who understand and relate to your experience.
Newly Diagnosed
Access the Newly Diagnosed Checklist for guidance on registration, research, educational materials for your care team, and ways to get involved
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