Ipsen Matches Rare Disease and TikTok Influencers to Create Connections

Ipsen’s new sponsored TikTok features the popular “Of course” trend and two social influencers, but with a rare disease twist. The short video shows two young women, Carli and Erin, using the familiar dialogue as a way to explain the symptoms and adaptations they make in living with fibrodysplasia ossificans progressiva (FOP).

“I have FOP, of course I have a straw in my purse since that’s the only way I can drink,” Carli says as she reaches into her handbag.

Text overlay on the screen explains that FOP is an ultra-rare disease that causes bone formation in soft and connective tissues. FOP affects about 400 people in the US and about 900 worldwide. Ipsen was not involved in creating the TikTok content, but its retinoid drug Sohonos was approved in August to treat FOP and reduce the volume of new ossifications in patients as young as 8 years old. Stewart Campbell “The intent is to drive awareness and for people to seek out the experts,” said Stewart Campbell, president of Ipsen North America, adding “We realize we need to take a non-traditional approach in our commercial executions and our medical execution. So we’ve really started to unpack the social media platforms and ask how do we engage and equip a patient and caregiver community with relevant information.”

It’s not the first time Ipsen has turned to patient TikTokers for partnerships. It worked with L. Marie, a woman living with rare liver disease PBC, on a SXSW panel and a sponsored TikTok she posted after the conference. Her video about “becoming the CEO of your own health” generated more than 420,000 views. Ipsen’s experience has made the marketing teams “bullish” on TikTok, and they’re looking to build out more content across different conditions, Campbell said. “Seven or eight years ago you would sponsor a website and hopefully people would find the website and you would struggle for Google optimization,” he said. “But now it’s far less about that. It’s about how do you facilitate them connecting. Providing the framework with which they can connect with each other.”