MOVE for ReNU
#MOVEforReNU - Virtual 5K Fun Run
Join in ReNU Syndrome's first #MOVEforReNU 5K fun run, a virtual event Saturday, April 26th, 2025.
While we are calling it a 5K, the idea is to have fun! Crawl, walk, sprint, or don't do any race at all! Invite your family, friends, and neighbors to participate! Registration is free. See instructions below to learn how to setup a fundraising page for your family, and invite others to join in your fundraising efforts!
1st ReNU Syndrome Awareness Day
🎉🧬🎉 HAPPY 1st ReNU SYNDROME AWARENESS DAY!! 🎉🧬🎉
In honor of the discovery of the gene RNU4-2, the newly-formed ReNU syndrome community will be celebrating April 2 (4-2)!
The parent group has also deemed the month of April to be our awareness month and we will be celebrating internationally again on 4 February (4-2).
Our parent group that started in May as 3, 2025 has grown to over 400 members and continues to increase rapidly by the day!
💕 Thank you to all researchers, clinicians, scientific advisory board, and supporters - we are grateful for you today and every day! 🫶
Please spread awareness and invite your networks to check out the latest map with over 100 entries in over 20 countries, the pictures and stories about our ReNU Warriors, our donation link, and conference information. Let’s continue to #ReNUhope together!
Rare-X Registry Info Session
Save the date to join the Rare-X Registry Info Session | Get Started Using Rare-X
Learn how to access the registry so we can save ReNU medical information in one place! It is critical that ALL patients join the registry because researchers want to find therapeutics for groups that have the most amount of collected data, so uniting on a global level is one of the best things we can do to help advance research and treatment development for all of our families.
Check out the recording of our info session: Intro to the Rare-X Registry
