Rare disease is defined as affecting fewer than 200,000 people. So, there is something about the term “rare disease”….when you hear that phrase….you think of that singular patient, that very particular and unique person. In fact, every day that I begin my work in the world of rare disease, I pause and reflect on that one patient that I may be fortunate enough to help. And sometimes, our perspective can shift in wonderful ways…
In January, our team had the chance to hear from a rare disease non-profit organization. Through a presentation, we were introduced to several patients being helped by the organization. We were lucky enough to see photos of children with their families and their caregivers; to get a sense of the community they have built through support groups, activism, and social gatherings.
Suddenly, it dawned on me. These children, these patients, their families and friends…they may be small in number, yes, but they are mighty in spirit, especially when they come together. How amazing to see all of these “singular” patients join to become something bigger, and tremendously special and powerful in the face of their challenges. It was a reminder that no one needs to be alone when facing a rare disease. While I still keep that singular patient in mind when I begin my work day, I find peace and comfort in knowing that, in the end, we all stand together as a united group.
Rare is precious. Rare is exceptional.
Rare gets our attention to the fullest measure, every day.
Pharmaceutical Specialty Representative