I’m sure you all remember the story of the tortoise and the hare. The hare is much faster than the tortoise and he gets off to a much faster start … READ MORE
We’re still recruiting patients even during Covid
Many of you may know that we recruit many of the patients and caregivers in our Rare Patient Voice patient panel by going to patient events like conferences, walks and … READ MORE
Let’s Name our Zebra Mascot – but not Zebra McZebface!
Thanks for the tremendous response we’ve received to help us name our Zebra mascot! We’ve received hundreds of names. And not just the names, but great thinking behind the names. … READ MORE
How LinkedIn works for Rare Patient Voice
Every conference we go to, I get a lot of people telling me, “I see you all the time on Linked In!” I sometimes wonder if that is a good … READ MORE
Get to Know: ALS
Amyotrophic Lateral Sclerosis, or ALS, has been gaining a lot of recognition over the past few years. It used to be known as Lou Gehrig’s Disease. But now most people … READ MORE
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