The World Orphan Drug Congress is where the industry meets to network, learn from each other, and discuss the latest developments in orphan drug development and research.

Supporting Rare Disease Awareness

In Advocacy by lauralLeave a Comment

This blogpost is provided by Premier Research.

By now, we’ve all seen the stats – 7,000 rare diseases. 50% of rare disease patients are children. 35% of deaths in the first year of life are due to rare diseases. An estimated 350 million people worldwide suffering from rare diseases.

But they’re not just numbers. To everyone at Premier Research, they’re a call to action.

That’s why today, Friday, February 27, our employees are joining together to raise awareness for rare disease in honor of Rare Disease Day 2015. The employees pictured here are just a few of our offices worldwide.

You’ll see they’re wearing their favorite pair of jeans to work, as well as a Global Genes Blue Denim Genes RibbonTM to top off their outfits. It’s an important cause: helping the non-profit Global Genes organization in its efforts to get the word out and support everyone who is 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.

By participating in the #CareAboutRare campaign on social media, sharing employee pictures and videos, as well as engaging with the Rare Disease community in the following days and weeks, we’re hoping to help spread the word about rare diseases. We’re urging everyone to take a minute and join in, as well as make a donation to Global Genes.

As we look at these same numbers again, we know that as many as 7,000 rare diseases affect an estimated 350 million people worldwide. Each year, 250 rare diseases are identified. In the 25 years since the enactment of the Orphan Drug Act, the U.S. Food and Drug Administration (FDA) has approved more than 340 treatments for rare diseases.

We can do more. We ourselves have conducted more than 100 rare disease studies over a recent five-year period, and finding solutions is something we work toward every day.

We’re proud to be a small part of Rare Disease Day 2015 – today, tomorrow, and well into the future. It’s our fervent wish that raising awareness that leads to education, which leads to support, which leads to research, which leads to helping conquer those 7,000 rare diseases.

We’re glad to have Premier Research as a Platinum Sponsor of the World Orphan Drug Congress USA, taking place April 22-24 in Washington, DC.

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