From the CNBC Cures Summit: Why Rare Disease Progress Starts with Community

By Kendall Davis

A few weeks ago had the privilege of attending the CNBC Cures Summit, not only as someone who has spent the majority of my career in rare disease drug development and patient advocacy, but as a Board Member of Team Telomere.

And I’ll be honest… I walked into that room cautiously optimistic.

Because if you’ve spent any real time in the rare disease space, especially alongside families, you know that attention can be fleeting. Moments like this can come and go, panels are held, urgency is expressed… and yet for so many communities, the day-to-day reality doesn’t immediately change.

But this event did feel different. So, before anything else, I want to express my gratitude to Becky Quick and CNBC for creating space for this conversation, and not just any conversation, but one that brought together an incredibly influential mix of leaders across media, finance, science, policy, and healthcare. That kind of convergence matters. It has the potential to shape what happens next in a lot of areas.

But I also want to ground this moment in something deeper. Because what was discussed on that stage, what is now gaining broader visibility, has been built quietly, persistently, and often without recognition by patient advocacy organizations for decades.

Including in the telomere biology disorder community.

As a board member of Team Telomere, I have the privilege of seeing just how much this community carries. This is a community of people navigating and managing multi-system disease, who are facing diagnostic delays, limited treatment options, and in many cases, life-limiting complications.

But they still show up. They show up to fund research when no one else will.
They show up to participate in natural history studies that become the foundational for clinical development. They show up to share their stories, not because it’s easy, but because it’s necessary. They show up to educate physicians, connect to researchers, build registries and work to define what meaningful outcomes actually look like in real life.

They show up, over and over again, in ways that quite literally make drug development possible.

That’s the part of this story that I think still isn’t fully understood outside of the rare disease ecosystem: Patient advocacy organizations are not adjacent to progress. They are the infrastructure that progress is built on.

In telomere biology disorders, like so many rare diseases, there is no “off the shelf” roadmap. The science is still evolving. The patient populations are small. The heterogeneity is real. And the stakes, for every decision, are incredibly high.

Which means that progress here doesn’t happen by accident. It happens because patients, families, advocates, researchers, and partners come together, often long before there is meaningful investment or widespread attention and begin building something from the ground up.

So sitting in that room, hearing leaders across sectors ask how we accelerate progress… it felt like movement.

Because the answer already exists. Progress accelerates when we recognize and invest in the communities who have already been doing the work. When we don’t just “engage patients,” but truly partner with them. When we don’t treat advocacy organizations as stakeholders, but as strategic collaborators. When we understand that lived experience is not anecdotal, it is operational, scientific, and essential.

For the telomere biology disorder community, this moment matters.

Because behind every scientific discussion, every investment conversation, every policy decision, there are real people carrying the weight of these diseases every single day.

To the Team Telomere community, to the patients and families, thank you.

Thank you for your courage in the face of so much uncertainty and forcontinuing to show up, even when the path forward isn’t clear, for sharing your experiences, your data, your time, and your trust, knowing how much is at stake.

You are not just part of this ecosystem. You are the reason it exists.

The progress we talk about in rooms like this is only possible because of what you have built, what you have contributed, and what you continue to give, often without guarantees, and always with hope. And that matters more than can ever be fully captured on any stage.

It is a responsibility, for all of us working in this space, to honor that trust by moving with urgency, with intention, and with deep respect for the community that makes this work possible. As your board member, I am deeply grateful to have the opportunity to represent Team Telomere and to (hopefully) contribute to the progress that each one of you is powering.