To create a stirring opera, there has to be a compelling human story to tell. And although drug development in the rare disease space is a far cry from a night at the opera house, pharma companies can still learn a lesson from the process of storytelling and stagecraft.

With a background in studying the opera, Stefan Riley has used his unique perspective to translate those lessons into rebranding efforts at Inozyme Pharma. As Inozyme’s director of investor relations, Riley has led the effort to help the company tell its own compelling story to a wide variety of stakeholders — from patients and healthcare professionals, to investors and potential new employees.

“Communicating complex science starts with the content, the libretti in opera, which has to tell a clear and accessible story. Then you get to the costuming, the music, the stage itself and the visual,” Riley explains.

Inozyme is a clinical-stage rare disease company that is developing novel therapeutics for the treatment of diseases of abnormal mineralization impacting the vasculature, soft tissue and skeleton. The science is complex, but Riley says that doesn’t mean that a compelling narrative can’t be built around the company’s work.

The centerpiece of the new branding is a library of illustrations depicting the mechanism of action and molecular targets for Inozyme’s lead candidate, INZ-701, a treatment for several genetic diseases including two rare abnormal mineralization disorders. Using creative imagery, the library was designed to resonate emotionally and intellectually with all the stakeholders involved.

“To connect with these various audiences, we separate healthcare professionals and patients on the website and take a thoughtful approach to what content goes on each page,” Riley says. “So, the patient's page has a very high-level view of the diseases. If you go to the healthcare professionals page, then you see the scientific publications, and you see the supporting documentation, which might not be as relevant or interesting for a patient or their family.”

Connecting with the patient

The stage was set for Riley as soon as he started working for Inozyme. The company was at a crossroads and needed a revamped website and message to communicate its work and understanding in rare disease.

“On my second day at the company, I met the CEO, Axel Bolte, who is based in Switzerland, and the first thing he said to me was, ‘Stefan, I hate our website. It makes us look like a bunch of old white guys and that’s not who we are,’” Riley says. “He wanted to ensure patients could feel comfortable with how Inozyme was working to develop solutions for their conditions, help investors understand that the company is leading the charge in these rare diseases, and excite potential employees about the prospect of working at a company at a very risky stage, which is essentially preclinical data. Those objectives set the tone for our communication moving forward.”

As clinical trials for the use of INZ-701 to treat ENPP1 deficiency, a rare genetic disease, get underway, and as it continues to develop the novel therapy for ABCC6 deficiency, Inozyme plans to expand the patient stories on the website.

“We have identified six patient families who are willing to tell their stories through video, photos, and narrative in ways in which others going through similar experiences can identify,” Riley says.

Partnerships with patient groups are also key to helping Inozyme get the word out about patient experiences and the company’s work in the space.

“We [are] partnering with two major patient organizations in the space, GACI Global and PXE International,” Riley says. “We're leading the way in both developing a therapy and developing understanding of the disease in partnership with patients and healthcare professionals, and patient organizations are also there to help guide our work. If you Google abnormal mineralization, there's very little that comes up in terms of either images or clear material. We want to be that resource for all of the different stakeholders in this complex rare disease area.”

By taking a creative approach to communications, Inozyme is committed to hitting the right note with its audience in the journey to developing therapeutics for debilitating rare diseases.