Rare Disease Day is more than a date on the calendar at PANTHERx. It’s a moment to pause, reflect, and reconnect with the mission that drives our work every day. Although Rare Disease Day falls on a Saturday this year, associates across our Pittsburgh and Collierville locations came together on Wednesday, February 25 for a companywide celebration honoring the strength, resilience, and stories of the rare disease community.
A Day Built Around Purpose
From the moment the day began, I felt the energy across all sites reflecting our PANTHERx Pride. Associates wore their PANTHERx gear, gathered for a catered lunch, and stopped by the photo booth to capture team moments. Throughout the day, employees also participated in “drop-in” testimonial recordings , sharing, in their own words, what Rare Disease Day means to them. The celebration continued with a watch party of Matter of Time, a documentary highlighting the lived experience of the rare disease, epidermolysis bullosa (EB).
Welcoming a Special Guest: Leah Bender
The heart of this year’s celebration was our Patient & Caregiver Panel featuring 14-year-old Leah B. and her parents. Leah lives with PraderWilli syndrome and is on a therapy to treat hyperphagia. Her family graciously joined us for an intimate conversation about their journey and their experience working with PANTHERx.
Associates heard firsthand about the daily realities of living with a rare disease, the importance of coordinated care, and the difference compassionate support can make. The Bender family’s openness and honesty reminded me, and all of us why our work matters, deeply and personally.
To help Leah feel welcome, we set up a cardmaking station where associates wrote notes of encouragement and appreciation. We also surprised her with a gift of PANTHERx swag!
Carrying the Spirit Forward
Rare Disease Day is a reminder that every role at PANTHERx contributes to something bigger. Whether you work directly with patients or support the teams who do, our work helps deliver hope, clarity, and care to those living with rare conditions.
Thank you to every associate who participated, volunteered, or simply showed up with pride and purpose. And a special thankyou to the Leah and her family for trusting us with their story and inspiring us with their strength.
At PANTHERx, every day is Rare Disease Day — and this year’s celebration made that clearer than ever.
- Angelica Duria, Senior Manager, Communications and Engagement