Image from the KnowPheoPara.health website that speaks to how rare Pheo and Para tumors are

KnowPheoPara: Shining the Spotlight on an Extremely Rare Disease

Do you know pheo and para? Chances are, the answer to that question is no. After all, fewer than eight out of one million people are diagnosed with pheo (pheochromocytoma) and para (paraganglioma) per year. But, if you are one of those eight people, or a doctor who is new to the disease, the information found on KnowPheoPara.health could save your life, or the life of someone else. It’s a website that comes to us from New York-based Progenics Pharmaceuticals via their ad agency, Flywheel. Recently, we spoke with Bryce Tenbarge, Senior Vice President of Commercial at Progenics, and Dave Miller, Creative Director and Managing Partner at Flywheel, to talk about the vision behind KnowPheoPara.health and what it could mean for pheo and para patients, and their doctors.

Serving the Underserved

Every year out of 1,000,000 people

Before KnowPheoPara’s launch in March 2018, if you wanted to know more Pheochromocytoma and Paraganglioma, you’d have your work cut out for you. There wasn’t much information out there, and the information that was available was often difficult to understand.

“These are very rare tumors, and often times the only information that’s available online is oriented to medically-savvy individuals,” explained Bryce. “The patient community really didn’t have anything out there except the very basics: what the disease is — not how it’s currently treated, how it may be underdiagnosed, how rare it is, and where one who has it should be treated. We wanted to bring more resources online to a physician and patient community that was underserved.”

Visit KnowPheoPara.health and you’ll notice that there are two sections of the website: one for patients and one for doctors. Both use language that is catered to their intended audience, as well as infographics and color to divide the content into bite-sized pieces of information — helping patients and doctors gain a deeper understanding, and find what they need, quickly.

Moving Ahead with the Right Domain

When the time came to build a website for Progenics’ latest campaign, its agency wanted a domain name that complemented the brand’s forward-thinking mission to “find, fight and follow” in the treatment of cancer – and .health fit the bill!

“The website is providing reliable and up-to-date information, so we thought .health was a great place to do that,” explains Dave. “Part of our rationale was around trust and credibility, and also around providing this information in a place that’s forward-looking on the landscape of the internet.”

Setting the Stage for a New Therapy

AZEDRA - NOW FDA-APPROVED

Flywheel tells us that KnowPheoPara.health is part of a larger awareness campaign for the Pheo and Para community, one that is expected to evolve over time. Case in point: Progenics announced on July 30, 2018, that it had received FDA approval for AZEDRA, the “first and only FDA-approved therapy for malignant, recurrent or unresectable Pheochromocytoma and Paraganglioma.”

Once AZEDRA is established in multidisciplinary cancer centers across the U.S., Bryce believes Progenics will begin to focus their efforts on driving the messages of the current campaign even further, utilizing KnowPheoPara.health and other types of communications to:

  • Educate doctors about what symptoms to look for in potential patients
  • Emphasize the importance of following up with current patients
  • Recommend treatment at centers of excellence, where patients have better access to specialized medical care

Connecting with the Pheo and Para Community

Since launching on March 15th, Dave says the KnowPheoPara.health website has received a “fantastic response from the community.” Although these tumors are extremely rare, the website has still managed to attract over 19,000 visits in a 5-month cycle (March to July).

“A lot of time was spent on the website reviewing the information and materials provided, and linking out to other resources in the community to get support,” Dave said. “There’s been a great deal of interest and enthusiasm from a community perspective.”

We love seeing a pharmaceutical company use their .health domain to empower patients with the information they need to be advocates for their own healthcare! For more information about this campaign and the disease itself, please visit KnowPheoPara.health.


Interested in a .health domain to spread awareness about a particular disease or condition?

Get Yours

 

Leave a Reply

Your email address will not be published. Required fields are marked *

sixteen − nine =