2026
Rare Disease Day
Every year on the last day of February, the global rare disease community comes together to raise awareness, share stories, and advocate for individuals and families navigating life with a rare condition. Rare Disease Day is a time to make the invisible visible—and for the Lesch-Nyhan community, it is a powerful opportunity to educate, connect, and inspire action.
What Makes a Disease Rare?
A rare disease is defined in the United States as a condition affecting fewer than 200,000 individuals. Globally, a disease is considered rare when it affects fewer than 65 in 100,000 people.
While each rare disease impacts a small population, rare diseases as a whole are not rare. There are more than 7,000 rare diseases worldwide, affecting an estimated 300 million people. Lesch-Nyhan disease (LND) is one of these rare conditions.
What Is Lesch-Nyhan Disease?
Lesch-Nyhan disease is a rare, inherited metabolic disorder caused by mutations in the HPRT1 gene. It primarily affects boys and is characterized by neurological and behavioral differences, including involuntary movements (dystonia), muscle stiffness, developmental delays, and the hallmark symptom of self-injurious behaviors. Individuals may also experience overproduction of uric acid, which can lead to kidney stones and other medical complications.
Like many rare diseases, Lesch-Nyhan presents differently in each individual. Families often face long diagnostic journeys, limited treatment options, and the need for highly specialized care. Despite these challenges, progress is being made. Researchers, clinicians, and families are working together to improve understanding, clinical care, and readiness for future therapeutic advances.
Join Love Never Sinks on Rare Disease Day
On February 28, 2026, Love Never Sinks invites you to stand with the Lesch-Nyhan community and the global rare disease movement. Together, we can raise awareness for Lesch-Nyhan disease and the millions of individuals living with rare conditions.
By making rare visible, we can:
Advance scientific research
Improve clinical care and care coordination
Strengthen support systems for families
Advocate for policies that benefit the rare disease community
How You Can Raise Awareness
You don’t need a large platform to make a difference. Every action—big or small—helps shine a light on Lesch-Nyhan disease and the families living with it.
Here are a few ways to participate:
Join us for a Rare Disease Day event
Download Rare Disease Day media/coloring pages
Share Your Family’s Story
Personal stories build connection and understanding. Sharing your experience helps others see the real impact of Lesch-Nyhan disease.Update Your Social Media Profile
Add a Rare Disease Day frame or post about Lesch-Nyhan disease to spark conversations and increase awareness. Photo TemplateShare Trusted Resources
Help spread accurate information by sharing resources from Love Never Sinks with friends, family, schools, and medical providers. LoveNeverSinks.OrgAmplify Rare Disease Day Posts
Like, comment, and share Rare Disease Day content to help extend its reach. Facebook
Making Rare Visible—Together
Rare Disease Day is about awareness—but it is also about hope. Hope for stronger community. Hope for better care. Hope for research progress. Hope for a future with more options for individuals living with Lesch-Nyhan disease.
Every post, every conversation, and every act of advocacy matters.
Thank you for being part of the Love Never Sinks community—and for helping make rare visible, today and every day.
Tags: #2026, #Awareness, #FamilyStories, Hope4LN, #RareDiseaseDay, #LeschNyhanDisease #LND