NORD Rare Summit 2020

The gift swag of a conference reveals a lot about the event. I’ve found that the swag is either a useful item or something that sits on your desk collecting dust. Much like the conference itself, it’s either going to be memorable or not. It can also give insight into how much thought was put into the event and how thoughtful organizers were of their attendees.

I’ve attended different types of conferences and collected tons of swag throughout my career. The Rare Disease and Orphan Products Breakthrough Summit hosted by NORD (National Organization for Rare Diseases) was the first conference that made a lasting impression. Since this year’s event was virtual due to the pandemic, the swag was sent by snail mail. When I opened the package, the first thing I noticed was the zebra. Around its neck was a little tag that explained why the zebra is the mascot of the rare disease community. It said “When you hear hoof beats, it isn’t always a horse. Sometimes it’s a zebra.”

We all have preconceived ideas, biases, and experiences that influence how we see the world. We have to open ourselves up to new perspectives to help us navigate a complicated world. The rare disease community has so many unique challenges that you need people constantly bringing new perspectives. What a message to send in such a small object!

The sessions throughout the conference were great. A few I attended addressed changes that organizations had to make due to the pandemic. The sessions talked about embracing the new digital world we are navigating and some of the ways organizations can overcome those challenges. One speaker said it forced strategic thinking to move faster than normal. Another speaker highlighted how being nimble to change was a strength of smaller patient organizations. I thought of how the LRG has been continuing its great work amid all of the new challenges.

One of the more impactful sessions was Diversity and Inclusion in the Rare Community. The speakers discussed how the challenges of rare diseases are compounded by inequities within the community. BIPOC (Black, Indigenous, and People of Color ) have limited access to healthcare and resources such as clinical trials. There are organizations working hard to help, but there’s still a lot to be done.

NORD 2020 zebraThe NORD Rare Summit was the first virtual conference I’ve attended. My experience with conferences has always been that they are very sterile and stuffy events. There are people in suits, a packed agenda, and the dreaded networking events. Even though it was virtual, I’ve never attended a more personal conference. All the speakers were so passionate about the work they are or will be doing. Everyone seemed so relaxed and engaged. My guess is sweatpants probably helped.

After all my talk about my NORD zebra, you may be wondering, “What did you do with it?” I gave it to my daughter. The most obvious reason is I knew she would love it because she loves horses and unicorns. It felt symbolic to give her the zebra because it was as if I was passing down the lessons I had learned. The gesture will serve as a reminder for me to teach her that even though she loves horses, she has to look out for zebras sometimes too.

Read more about NORD & the LRG