AstraZeneca's Alexion to amplify the voices of rare disease, with a focus on diversity in diagnosis

It’s a rather bitter irony that so many people suffer from a rare disease—about 300 million people worldwide. There are around 7,000 different rare diseases, of which only 5% have a viable treatment option.

For this year’s Rare Disease Day, which occurs on the last day of February, Alexion, AstraZeneca’s rare disease division, joined with EURORDIS, Rare Diseases Europe, to bring awareness to these lesser-known diseases. Like so many other recent initiatives, the focus this year is on health equity, a problem that hits the rare disease community hard.

“It generally takes about five years five to seven years for patients to be diagnosed,” Tamar Thompson, Alexion vice president and head of corporate affairs, said. “That’s a parallel with what you’ve probably have seen in other conditions where minorities often don't get diagnosed—they have to go to multiple physicians before they can find the right diagnosis. We know that oftentimes minority patients who have that diagnosis of rare disease tend to have amplified or conditions that go well beyond some of their other cohorts in Caucasian or Asian communities.”

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It’s not just about letting others know about rare diseases, but doing so in order to make real change. Partnering with The Hill, Alexion-sponsored the event, “Rare Disease Treatments: Regulatory and Policy Reform,” with input from patient advocates, health care professionals, researchers, clinicians and policymakers pushing for regulatory reform in order to advance the treatment of rare diseases.

Other initiatives include collaborations with advocacy groups and policy leaders for virtual events and a big social media push across all of its channels including LinkedIn, Twitter, Instagram and Facebook. The company also employed paid content including an article by CEO Marc Dunoyer in Fortune.

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Of course, for Alexion, which has focused on rare disease for over 30 years, it’s not just about one day. AZ bought out Alexion last year for $39 billion, mainly to get its hands on Soliris, a $4 billion-a-year drug FDA approved for a host of rare diseases, including atypical hemolytic uremic syndrome, myasthenia gravis and neuromyelitis optica spectrum disorder. 

“This is a marathon, it's not a sprint. So for us, this is all year long, we champion the voice of rare disease every day—365 days a year. So the the messaging and the outputs from today's conversation will put will pull through for next steps throughout the year,” Thompson said.