Events
Stay connected with the Lesch-Nyhan community through upcoming Love Never Sinks events. Our meetings and gatherings bring together families, researchers, and advocates to share the latest updates in Lesch-Nyhan research, discuss ongoing projects, and build stronger connections worldwide. Each event is an opportunity to learn, collaborate, and support one another as we work toward greater understanding and hope for all those affected
Join us for the 16th Annual Great Plains Rare Disease Summit.
At Love Never Sinks, we know how important it is for families to feel connected, informed, and supported on the rare disease journey. That’s why we’re excited to share an opportunity to learn and connect with others in the community.
Please check out the Great Plains Summitpage to learn more, review the agenda, and then RSVP!
The Minnesota Rare Disease Advisory Council is hosting a virtual watch party of the 2026 Great Plains Rare Disease Summit, happening May 7–8, 2026. We’re proud to collaborate with Erica Barns through her work with the Minnesota Rare Disease Advisory Council—and we’re excited to share an upcoming event she’s part of, which Love Never Sinks will also be attending.
Hosted by Sanford CoRDS Rare Disease Registry, this annual event brings together doctors, researchers, and advocates who are working to better understand rare diseases and improve care for individuals and families. It’s a great chance to hear about new research, real-world experiences, and ways families can get involved.
This year’s summit will include a special focus on skeletal and craniofacial rare diseases, along with sessions designed to support both the medical community and families. We’re also excited to share that Erica Barns from the Rare Disease Advisory Council will be speaking as part of the event.
The watch party is a welcoming way to engage—whether you attend for a short time or the full event, you’ll be joining a community that understands the journey.
MN Rare Disease Advisory Council Watch Party Details
📅 Thursday, May 7 | 3:00–5:30 PM
📅 Friday, May 8 | 8:30 AM–5:00 PM
📍 Spruce Tree Center, St. Paul
Please RSVP here: https://forms.microsoft.com/g/nHG5TuLSpt
Event Details at Sanford
📅 Thursday, May 7 | 3:00–5:30 PM
📅 Friday, May 8 | 8:30 AM–5:00 PM
📍 Sanford Center, Sioux Falls, SD or Virtually via Zoom
Register here zoom through Cords/Sanford
We encourage families, caregivers, and supporters to attend and take advantage of this opportunity to learn, connect, and feel supported.
Rare Disease Day UofM
Registration for Rare Disease Day, 2026 is open! University of Minnesota’s Center for Orphan Drugs (CODR) hosts this annual event to bring together patients, researchers, organizations, students, and policy-makers, and more in raising awareness for rare disease issues. The event is free and open to all on Thursday, March 5, from 9:30-2:15 with options to attend virtually or in-person at the McNamara Alumni Center. This year’s theme is “Therapies for Few, Impact for Many: Rethinking How We Develop Rare Disease Treatments.”
Rare Disease Day 2026🦓
Lesch-Nyhan Disease is often overlooked—but data helps make those affected visible.
This Rare Disease Day, Love Never Sinks invites families and supporters to see the rare and support progress by joining the Lesch-Nyhan Disease Registry.
Every story. Every data point. Every family matters.
SEE THE RARE.
SHARE THE DATA.
CHANGE THE FUTURE.
November 23 Meeting | Love Never Sinks Updates & Global Lesch-Nyhan Research
Love Never Sinks invites families, researchers, and advocates to our upcoming meeting on November 23 at 10 AM (Central US). We’ll be sharing the latest updates from the NIH, new findings from global Lesch-Nyhan studies, and progress from ongoing research collaborations. This is a great opportunity to stay connected, hear what’s new, and learn how Love Never Sinks continues to support the global research community and families impacted by Lesch-Nyhan.
MDBR Bike Ride
At Love Never Sinks, we are a passionate community of families, advocates, and researchers dedicated to making a difference for those affected by Lesch-Nyhan Disease. Our journey began with love—for our children, for each other, and for a future where families have hope and answers.
We believe in supporting families, empowering research, and driving change. That’s why we’re raising funds for our Research Readiness program—to ensure scientists have the resources they need to move discoveries forward and to connect families with the latest advancements in treatment and care.
A portion of every dollar raised will also help provide direct support to families in need, offering them resources, guidance, and a compassionate community as they navigate this challenging diagnosis.
All funds raised helps us build a stronger foundation for research and provides support to families navigating this challenging diagnosis. Together, we can make a lasting impact!
Join us in this mission. Donate today and be part of the change! 💙
#LoveNeverSinks #SupportFamilies #FundResearch #ResearchReadiness #Suporting Families