Rare Disease Report

Conversations with a Zebra on Rare Disease Day 2017

MARCH 01, 2017
Pam Mace, FMDSA
On Rare Disease Day, February 28, 2017, RDR sat down with one of the head zebras in Washington DC to talk about the meaning and power of the zebra, Ellen Degeneres, and a preview of the #ZebraDanceOff2017 that will be bigger, louder, faster that 2016's version.

"There's Jim and there's myself and Jim kind of really started this and motivated me to get out there and then I recruited some other zebras and I wanted to raise awareness and when people see you wearing this outfit they look at you funny and then it actually starts the conversation.

And so we have raised so much awareness with our zebra sightings in the last 24 hours we've been on the metro we been with construction workers we help Uhaul move some stuff. But with each of these individuals and groups of people we were able to discuss rare diseases and then you know our share our own personal stories and talk about the statistics that there are over 7,000 rare diseases and over 30 million Americans are affected.

I'm sure it has a different meaning to everyone but it gives me hope and it's you know we want doctors when patients come in you know instead of thinking about the normal things like when they hear hoofbeats think horses they need to occasionally really look at the bigger picture and think about a rare disease and think about the zebras. With my disease community the delay in diagnosis is for 4-7 years because everyone thinks about the horses and that the Zebras. So they think about the common causes of symptoms and it it causes consequences in many of the rare disease patient communities.

Extremely disappointed Ellen, because we like to dance and we've been on videos we've gotten thousands of views and you're still not paying attention! Just like the doctors! Come on Ellen let's do this!

We're all going to be a global genes that's where the started last year and I think that we need lots of zebras to show up I mean lots of zebras and I think we we need to have a flash mob I think that would be wonderful."

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