Millions participated in this year’s World Rare Disease Day–so many, in fact, that we had to do a second compilation post to show all of your rare spirit! At Global Genes, we love to see the rare community come together for a great cause–and come together you did! We’re proud to bring you a few stories of how the day was spent around the world. Stay tuned to The RARE Daily in the coming weeks to see even more recaps. Want to share your event, fundraiser, or awareness activity with us? Submit your story here for a chance to be in our next post!
“One of the golden moments from our Friday, Rare Disease Day meeting at Radys might have been this question from the audience, ” If I am in the ER or in the hospital, what are the questions that I should be asking you?
“Ask us everything and anything. We are happy to have someone listen to us.”
I have a really good feeling that one of those medical students or residents, when faced with a child with an unexplained fever and rash or when looking at some lab reports that read abnormal creatine levels, will recall Dr Vaux’s point about the pitfall of the “diagnositic inertia in the EHR” and think about rare diseases.”
-From Carol A. Dutch on the Rare Disease Seminar at Rady Children’s Hospital in San Diego.
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The team at Synageva in Lexington celebrated World Rare Disease Day by doing a lunch and learn with all of their employees on patient advocacy and how they can play a greater role in awareness and focus on very deserving rare disease communities.
– Scott Riccio, Vice President, Global Patient Advocacy
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RARE on the Vegas Strip!
These pictures are from the Sugar Shindig in Austin, TX on Rare Disease Day. The participants wore jeans and ribbons proudly (Attire was Dressy Denim) and had a fantastic evening of fundraising and awareness building. They represented the rare disease community by including patients, patient families, doctors, and industry members.
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