The Power to Build Awareness Around Rare Diseases

Kasey Walsh is Founder & CEO of Winsights..

By Kasey Walsh

February is Rare Disease Month, a time when rare conditions briefly come into focus, but for families living with them, the reality never fades. 

My daughter was diagnosed with a rare genetic disorder, AP-4-HSP. After that, things began to feel surreal. I was thrust into a world of isolation and uncertainty. The widespread understanding of rare conditions is that most are yet to be discovered. I became the mom reading research late at night, comparing notes with other parents, and trying to connect dots that no system seemed designed for us. Like many parents in rare disease communities, I became a parent-driven researcher out of my love for my daughter and urgent necessity.

It struck me how parents, exhausted from the “extras” this diagnosis brought into their lives, still put in much more work behind the scenes out of love and devotion to their child. We tracked symptoms, noticed patterns, shared experiences, and sought out local specialists, yet little of that made its way into systems meant to support research or treatments. This led me to build Winsights, a venture philanthropy initiative grounded in patient ownership of health data, where patients are partners, not products. I felt compelled to build a space rooted in trust and inclusion, where people could show up honestly, feel less alone, and know their lived experiences are honored for their meaning, impact, and ability to educate.

Rare Disease Month is about awareness, but awareness is only the beginning. Real progress comes when we listen to the people living these realities and design systems that reflect their lives.

Quality of life is not measured solely by growth or milestones, but by moments of connection, understanding, and shared humanity. That is the power of encouraging discussions around rare diseases, and why this matters far beyond just February.

Kasey Walsh is Founder & CEO of Winsights. https://www.linkedin.com/in/kasey-walsh-7899b63/ ; https://www.winsights.life/