Rare Disease Day 2026 Rare Disease Day 2026 is a time to come together, raise awareness, and honor the individuals and families living with rare conditions like Lesch-Nyhan disease.
Join Love Never Sinks on February 28, 2026 as we see the rare, share real stories, and strengthen a community built on compassion, research, and hope.
This year, we are honored to welcome Dr. Oleg, who will share updates on his work at the NIH and his ongoing collaboration with the Lesch-Nyhan community. Dr. Oleg will provide an update on the current NIH study—14 individuals are enrolled, with a goal of 30—and discuss what researchers are learning so far and why community participation matters.
We’ll also share updates on what Love Never Sinks has been busy with, including new collaborations, research readiness efforts, community support initiatives, and what’s ahead in 2026.
Join us for this important conversation to learn, ask questions, support one another, and help shape the future for those living with Lesch-Nyhan disease.
https://us06web.zoom.us/j/82029287219?pwd=RYT0raKAyW7Qlb1SWp3ynNdPGt4aYh.1
Meeting ID: 820 2928 7219
Passcode: 183938
“Every zebra has a story. This is ours. 💙”
SEE THE RARE.
SHARE THE DATA.
CHANGE THE FUTURE.
To help spread awareness and show your support, we’re offering a free Love Never Sinks Lesch-Nyhan sticker—perfect for water bottles, wheelchairs, laptops, or to share with friends and family.
Please fill out this form to receive yours and stay connected.
Rare Disease Zebra with Sunglasses and the Love Never Sinks Logo with a Heart and Anchor surrounded by a circle that says I am Rare. Lesch-Nyhan. Love Never Sinks.Org
Your experience matters.
Join the Lesch-Nyhan Disease Registry and help shape future research.