Rare Disease Day 2025: When Rare is Your Everyday

Tomorrow, February 28th, 2025, is Rare Disease Day—a day that holds deep personal significance for my family. It’s a day to stand with millions worldwide, raising awareness and advocating for those living with rare conditions. It’s also a reminder that while each rare disease may affect a small percentage of people, the collective impact is enormous.

Rare diseases often leave families feeling isolated, navigating a medical landscape with few answers and even fewer treatment options. I know this firsthand. My son, Harrison, was born with two rare conditions: Arthrogryposis Multiplex Congenita (AMC), which affects 1 in 3,000 births, and Nemaline Myopathy (NM), an even rarer neuromuscular disorder affecting 1 in 50,000 people. This past year, our family added another rare diagnosis to our reality—my daughter, Abby, was diagnosed with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder occurring in 1 in 5,000 to 1 in 20,000 people.

These conditions are more than statistics to us. They shape our daily lives, from the countless doctor visits and therapy sessions to the unseen struggles of simply moving through a world that isn’t built for those with rare disorders. Harrison faces physical challenges that require ongoing medical care and adaptive support. Abby’s EDS presents its own hurdles, from joint instability to chronic pain. There is no cure for either condition—only management, perseverance, and the hope that awareness will drive more research and better treatments.

Rare Disease Day isn’t just about recognizing these conditions; it’s about action. It’s about advocating for earlier diagnoses, greater medical research, and better access to specialized care. The rarity of these diseases often means fewer resources and a lack of understanding, even within the medical community. Families like ours are left to become experts, researchers, and advocates all at once.

But we are not alone. The rare disease community is strong, filled with individuals and families fighting the same battles, pushing for the same breakthroughs. By sharing our stories, we contribute to a larger movement—one that seeks to bring visibility to those who often go unseen.

So, tomorrow, take a moment to recognize Rare Disease Day. Learn about conditions that affect real families, real children, and real lives. Share, support, and advocate. Because awareness leads to change, and change leads to hope.

For more information, visit https://www.rarediseaseday.org and be part of the movement to ensure that no one facing a rare disease feels alone.