2024 NORD Breakthrough Summit
As someone deeply involved with the rare cancer and rare disease community since my own cancer diagnosis in 1995, I've had the honor of speaking at previous NORD events during the pandemic and taking an active role in their growth and impact.
Something special I am incredibly proud of is the 2020-2022 collaboration with NORD that created NORDpod, which became the most listened-to rare disease podcast in the world. Across 36 episodes and nearly 500,000 downloads, the voice of the rare disease community was heard loud and clear.
But now, I had the extraordinary experience of attending the 2024 NORD Breakthrough Summit in Washington, D.C., and I still can't get over it.
And reuniting with Alli Ward was icing on the cake. Congrats again on your new position as Director of Membership! They're lucky to have you.
Now, as to the Summit, there's nothing like being there in person, surrounded by the energy of hundreds of attendees, advocates, industry leaders, and—of course—NORD's fantastic team. It was a family reunion but with less green bean casserole and more innovative science that could potentially save your life.
Seeing familiar faces, hugging old friends, and meeting new ones—especially some of the emerging advocates who are shaping the future—reminded me why I've been doing this for nearly three decades.
Throughout the Summit, there were incredible sessions that covered everything from making gene therapy more accessible to the role of medical devices in rare disease care.
I mean, where else can you find the FDA, NIH, biotech CEOs, Nonprofits, and passionate patient advocates all discussing how we can healthcare suck less together?
Panels on enhancing clinical trial success, balancing cost and innovation, and embracing real-world evidence made it clear that we're finally starting to center patients in the conversation in meaningful ways.
And, as always, the breaks were filled with networking—which, let's face it, is just code for comparing notes, swapping stories, doing business, and figuring out how we can all collaborate to get stuff done.
The NORD Breakthrough Summit is a place where magic happens—where the impossible suddenly feels within reach. For those of us who've been fighting for better care, better access, and better outcomes for years.
It's moments like these that fuel the fire to keep going. It's knowing that we are not alone in this work—that there are passionate, brilliant, and kind-hearted people willing to spend their time, talent, and treasure to make life better for others.
To NORD, thank you for continuing to gather this community in such meaningful ways.
A special shoutout to my friend and colleague Pamela Gavin, who recently took the reins as CEO of NORD. I'm incredibly proud of her. This Summit was her debut event to the community, and it showed. Bravo!
To the fellow advocates and professionals I met, let's keep pushing forward, making noise, and finding ways to collaborate.
And to those who've never been to a NORD summit—trust me, you've got to experience it. Just be prepared to laugh, cry, and leave with a notebook full of ideas and a heart full of hope.
#NORDSummit #RareDiseaseCommunit