Migraines are not the typical afternoon headache, but many who don’t have migraines simply don’t understand that.

Amgen’s and Novartis’s Speak Your Migraine campaign has worked to change perceptions of migraines using tactics like telling patient stories and trying to change how people use the word “migraine.”

The campaign launched for Migraine Awareness Month last June and has built an online community of migraine sufferers, with the help of a partnership with Facebook, who are speaking up about the condition.

One seemingly simple change to the word “migraine” was part of the effort to change how the condition is perceived. The campaign only refers to migraine — without the “s” — in an effort to make it seem more “ever present and not just a series of attacks,” explains Carly Baron, executive director of neuroscience U.S. marketing at Amgen.

“Together we can help educate that migraine is more than a headache,” Baron says. “It is a long-term disabling disease that can profoundly impact someone’s ability to carry out everyday activities like attending family events or going to work. That is why we also set out change the lexicon around migraine.”

Amgen based the campaign on patient research to identify how patients felt about their migraines, from their treatment to the ability to talk to their doctors about it. Amgen also formed three categories of patients that the campaign tried to reach: those who rely on their doctor to treat migraine, those who are proactive in managing migraines, and those who feel misunderstood by both their doctor and peers when it comes to migraine.

The two companies also conducted research on migraine stigma and found that the stigma stems from several areas: misconceptions about the pain, the difficulty of diagnosis, an association with women, who are more likely to have migraines, and misunderstanding that migraine is a disorder.

The campaign tried to reach those audiences, along with the loved ones and caregivers of migraine sufferers, with media buys on WebMD, Migraine.com, Migraine Again, and Everyday Health, along with a paid social media effort to drive consumers to the Speak Your Migraine website.

To better target the audiences on social media, the campaign partnered with Facebook. Because of this partnership, Facebook became the most engaged audience for the campaign, three times more likely to complete the Migraine Impact Assessment and twice as likely to sign up for emails on the campaign website.

“Beyond leveraging Facebook for its targeting abilities, we were also able to tap into its mission to bring the world closer together,” Baron says. “By making people with migraine feel understood, heard, and supported, we created a venue for people with migraine to connect, share, and speak their migraine.”

While the Speak Your Migraine campaign is an unbranded, disease awareness effort, Amgen and Novartis are also developing a migraine treatment which is currently in late-stage trials and likely to receive FDA approval. The drug, Aimovig, would be the first migraine treatment from the two pharma companies. Amgen and Novartis reported that Aimovig met its goals in a phase 3b trial in January.

The ultimate goal of the campaign, Baron says, was to help people with migraine feel more empowered and less alone. Through patient stories, doctor recommendations, and online tools, the combined Amgen-Novartis team worked to end the stigma and doubt around migraine.

“Speak Your Migraine has a simple, yet audacious goal: Take the topic of migraine, one of the most misunderstood diseases, out of the shadows and into public dialogue,” Baron says, “By changing the way people think about migraine — from a series of attacks to a serious neurological disease — we hoped to move patients away from shame and self-blame and toward empowered, productive conversations.”