Rare Disease Day 2021 – Creating Connection While Being Apart (original) (raw)

This Sunday, February 28, is Rare Disease Day. It’s a day that leaves me humbled and inspired by the resilience of the rare disease community and I’d like to share my deepest gratitude to everyone who works tirelessly to improve the lives of those affected by rare diseases. I’d especially like to thank my colleagues at Alexion for their relentless dedication to serving patients and keeping them at the heart of every decision we make. The work we do matters, and the way we show up and show support for this community matters just as much.

Rare Disease Day has been a hallmark event for the rare disease community for 14 years and each year, the spirit, energy, and support of this day grows. This year has been no different. Despite being apart, we came together in new and bigger ways to rally around the community we are so privileged to serve. At Alexion, we created opportunities to connect with patients virtually; we hosted and sponsored Rare Disease Day events across the globe; and we engaged in critical conversations that resulted in meaningful insights and new ways of thinking. If you haven’t yet, I encourage you to visit Alexion’s Rare Disease Day microsite where you can send a postcard, designed by our special friends in the community, to a rare disease patient, listen to video messages from Alexion employees and stakeholders, and watch the replay of our health equity panel. For me personally, the highlight of the week was having the opportunity to hear my own colleagues share their own experiences with rare disease. It was one of the most inspiring and authentic conversations I’ve been a part of, and I am deeply grateful to those who shared their stories.

On Sunday, I encourage each of you to take time to reflect on the meaning of this day, the significance of what we do, and most importantly, the reason why we do it. Because for the 400 million people around the world living with a rare disease, Rare Disease Day is so much more than just one day, it’s their every day.