The LCC Foundation | Rare to Remarkable

At The LCC Foundation, we believe that rare should never mean forgotten—and that every person living with LCC deserves hope for a better future. Leukoencephalopathy with Calcifications and Cysts (LCC), also known as Labrune Syndrome, is an ultra-rare neurological disease with no approved treatment or cure. For families facing this diagnosis, the need for answers is urgent. Founded in 2022 by parents determined to change the future of LCC, The LCC Foundation is a nonprofit organization dedicated to advancing research, accelerating the development of treatments, connecting families worldwide, and raising awareness. Through collaboration with researchers, clinicians, industry partners, and the global LCC community, we are working to turn scientific discoveries into meaningful progress for patients and families. Our mission is clear: To move LCC from rare to remarkable—and bring us closer to a future where effective treatments are possible. But we cannot do it alone. Every voice, every partnership, and every contribution helps move us forward. 💙 Join us in changing the future of LCC. 🌐 Learn more: https://www.lccfoundation.org 💙 Support our mission: https://givebutter.com/c/together-far... Together. Farther. Faster. #LCCFoundation #LabruneSyndrome #RareDisease #SNORD118 #RareDiseaseResearch #PatientAdvocacy #FromRareToRemarkable