Alexion uses superheroes, social media to raise rare-disease awareness



Alexion Pharmaceuticals has launched a new unbranded campaign, Uncommon Strength, designed to unite patients with rare or neglected diseases as well as raise awareness for these conditions.  The initiative's tagline is meant to celebrate the “resilience and and extraordinary courage” of patients with rare diseases, according to Alexion spokesperson Emily Vlasak.

“Reaching a diagnosis for a rare disease is often a long and challenging experience,” she said. “The campaign is meant to speak to the inner strength and resilience that patients [must have to] go through this process.”

Uncommon Strength exists primarily online. At the campaign's eponymous website, patients can create their own superhero avatars and upload profile pictures to receive customized social-media overlays.

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The website features information about four rare diseases, all of which Alexion treats with one of three products: Soliris, Kanuma, or Strensiq. The four diseases are hypophosphatasia, lysosomal acid lipase deficiency, atypical hemolytic uremic syndrome, and paroxysmal nocturnal hemoglobinuria. The site also shares links to disease-specific patient groups for those four conditions.

“What we're really trying to do is reach patients with information,” Vlasak said. “If we can shorten one person's time from symptom to diagnosis, that's a great thing.”

Wendy White, SVP, rare disease at Dohmen Life Science Services, said bringing value to patients — whether by providing information or connecting them to relevant organizations — is critical in rare-disease marketing. “You're not trying to break through the clutter — you're trying to help them,” she explained. “These patients are much more engaged. You don't have to entertain them; you have to give them really valuable information.”

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Just as important for rare-disease patients is connecting with a community. “These are diseases that impact fewer than 20 people per million, so you may be the only person in your state that has this disease,” Vlasak pointed out. “Social media is a critical component for connecting with the community in other states and countries.”

Social media has uses outside of bringing people together, White noted, explaining that listening is just as important on social platforms as sharing. “It's where patients are. It's central for figuring out their biggest needs,” she added.