Rory Belle Foundation
We are a family run foundation established to raise funding and awareness for a gene therapy cure for the NARS1 disease. Today, we know of about 70 worldwide patients with this rare disease, we hope to connect and educate others on this disease! To bring one more day of joy to kids and families battling NARS1 disease.
Founded
2022
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Denver
The Rory Belle Foundation | The Home for NARS1 Families The Home for NARS1 Families We care for everyone touched by NARS1 disorder. We will change the future for those with NARS1 disorder by connecting families sharing knowledge with researchers and clinicians and discovering treatments. Come and join us. Meet other families support The Rory Belle Foundation or join our family of researchers and medical professionals.
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Rory Belle Foundation
Tickets are on sale now for our annual Fall Gala Fundraiser. This year we are bringing the party to Detroit to visit Sophie Wait and family 💜 Grab your dancing shoes and join us in Downtown Detroit on Novemberber 7th for a fun night of entertainment for a great cause - NARS1 disorder research. 🧬 Visit our event site for all of the details and information, as well as to purchase tickets before prices go up October 1st.
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Rory Belle Foundation
Today, July 25th, is the first-ever Genetic Testing Action Day. We’re proud to raise awareness about why early genetic testing matters and urge families facing developmental / medical concerns to talk to their doctors about genetic testing. Join the #StartGenetic movement by spreading the message on social media and visit StartGenetic.
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