There are more than 10,000 known rare diseases – together they make the 3rd largest country in the world!!! 1 in 10 Americans have a rare disease – and though rare diseases affect millions of people in the US – only a few hundred rare diseases have safe, effective treatments.
When living with a rare disease, it’s easy to feel alone, outnumbered or less deserving when living with a rare disease.
A Surprising fact is that Rare Disease research contributes a great deal to greater public good!!!
○ Discoveries in Rare Disease Research lead to MAJOR BREAKTHROUGHS in common diseases – because caring about zebras means caring about details. These details are often key to unlocking major therapies in non-rare conditions like Parkinson’s, cardiovascular disease and cancers.
○ Rare Diseases provide research models & care approaches that help clinicians better understand and care for common diseases!
Rare is beyond numbers because ~7000 RDs together >> Rare is a SUPER POWER.
On February 27, 2026, NIH hosted its annual Rare Disease Day event to raise awareness about these disorders, the people they affect, and NIH collaborations that advance research for new treatments. This event was sponsored by the National Center for Advancing Translational Sciences (NCATS), and featured panel discussions, rare diseases stories, and much much more.
Representatives from the MIHRA Foundation attended, hosted a table and it was an endless festival of meeting new people – adults and children – and learning about their experiences – and making plans to join forces to stand for Rare Diseases!!!
Myositis featured strongly with representative panelists and speakers and posters!