Premier Research- Rare Disease Day

Join us in supporting Rare Disease Day, Friday, February 28

In Advocacy, Orphan Drug Congress by Freya SmaleLeave a Comment

This guest blog post was provided by Premier Research.

7,000 rare diseases, many untreatable.

50% of patients are children.

35% of deaths in the first year of life are due to rare diseases.

To us that’s a call to action, 365 days a year – and especially on Rare Disease Day.

At Premier Research, we spend every day helping sponsors develop new treatments for rare and genetic diseases. For us, it’s not just another disease area. It’s a passion, and we’re not ashamed to say so.

Or to ask for your help.

This year for Rare Disease Day, we’re supporting the non-profit Global Genes organization to help get the word out and support everyone who’s helping put an end to the tragedy of rare diseases.

Global Genes helps patients become successful advocates and funds innovations in science and technology that will impact today’s patients within their lifetimes. Learn more at globalgenes.org.

Earlier this month, we sent out more than a thousand Global Genes Blue Denim Genes RibbonTM to our customers and our employees, in hopes that they’ll wear the ribbon proudly on Rare Disease Day.

Don’t worry, if you don’t have a ribbon, make sure to wear a pair of jeans on the day, and show your support that way. 

Finally, tweet @premierResearch a picture of your ribbons and jeans, using the hashtags #CareaboutRare or #WRDD2014!  We’ll be collecting pictures from around the globe, and we’d love to have you be part of our gallery.

We’re excited to help raise awareness on Rare Disease Day. Awareness leads to education, which leads to support, which leads to research, which leads to figuring out how we can tackle more of those 7,000 rare diseases!

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