At the National Keratoconus Foundation (NKCF), we are focused on sight. But as any member of the keratoconus (KC) community knows, vision is only one part of the story. Quality of life—the day-to-day experience of living with this condition—matters just as much. That’s why we’ve been working hard to understand what truly improves life for people with KC—and what stands in the way. What are the biggest challenges patients face? What support do they wish they had earlier? How do emotional well-being, financial barriers, and access to care shape their journey? These are the questions we’re asking through our latest research and outreach efforts. 

This is more than just data collection. The insights we gather help shape the resources we offer, the awareness we build, and the change we advocate for. Whether it’s working with clinicians to improve diagnosis and communication, or partnering with policymakers to address gaps in care, we’re committed to making sure the voices of our KC community are heard—clearly and powerfully. But we can’t do it alone. 

We need your help to amplify this work. If you’re living with KC, please consider taking part in our current survey. If you know someone who might benefit from what NKCF offers, help us spread the word. And if you’re in a position to give, a donation of any size helps us continue this vital work. 

Together, we can do more than raise awareness. We can help people with keratoconus feel seen, supported, and empowered to live the best lives possible. 

Yours in progress and partnership,
Amy Hellem, PhD, FAAO
Director, National Keratoconus Foundation