Finding A Rare Voice: Janssen and The Mighty Bring Personal Storytelling to the PAH Patient Community


People living with pulmonary arterial hypertension (PAH) can feel isolated and overwhelmed when they are diagnosed with a serious disease they have never heard of before. PAH is a rare, progressive disease with no cure that causes high blood pressure in the arteries of the lungs. With only about 30,000 people in the United States with the condition, it can be incredibly hard to find others going through similar experiences.

Knowing how important it is to be able to hear from others who have a first-hand experience living with PAH, Janssen launched a series of videos and written perspectives on The Mighty, an online patient network. The program is aimed to empower people living with PAH to have conversations with their care teams around personalized goal setting, and to highlight the stories of individuals living with PAH for others who may understand what they are going through.

The content is offered through multiple lenses, including perspectives from people who live with PAH, but also from those who care for them, including doctors, nurses and loved ones—all of whom play an important role in the management of PAH. Through their unique viewpoints, the series provides a look at the patient journey, explores exam room dialogue and goal setting, discusses treatment of PAH, and stresses the importance of working with the full care team to manage PAH.

We launched in November 2020 during Pulmonary Hypertension Awareness Month with an innovative, illustrative storytelling approach to bring the various stories to life and promoted the content through social media on Janssen and The Mighty’s Facebook and Twitter pages.

And, the community responded.

To date, there have been more than 400K views of the custom PAH disease education videos with an average of eight minutes spent on the landing page. In addition to watching the videos and reading the online content, the community is also sharing the series with each other, positing positive comments online and tagging others so they watch as well.

With exceptional interest and engagement to date from the PAH community and complementary promotion across Janssen-owned social channels reaching nearly 300K people and garnering more than 60K engagements, we are enthusiastic around our results.

Jeremy Mann is Director of Marketing, Senior Director, Customer Experience at Janssen.

Note: Participants worked with Janssen to share their experiences and were paid for their time.

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