Acute hepatic porphyria (AHP) is a family of rare genetic diseases that can cause severe, potentially life-threatening attacks. The condition is commonly misdiagnosed because it’s so rare. That’s why it is important to raise awareness of AHP and of the genetic tests that are available to provide diagnostic certainty.
One of the most effective ways to do so is by way of patient storytelling. During the era of Covid, many live patient storytelling initiatives had to transition to a virtual format. Alnylam decided that if they were going to offer a patient story online, it should capitalize on all of the online format’s potential, rather than act as a mere substitute for another story format. That’s why they opted for SNOW’s “Captivate” format, a standard that marries traditional rich storytelling with an innovative, interactive format.
SNOW worked with Patient Ambassador Amalia, an artist who lives with AHP, to create a website that tells her Story. The website allows the audience to immerse themselves in the true patient voice, which is shared though Amalia’s own personal outlet of painting. Several short video vignettes are paired up with a corresponding picture of Amalia’s. The audience witnesses the pictures come to completion—literally (we can see the development from draft to final work) and figuratively (Amalia shares the part of her journey that inspired each of the pictures). This way, we learn what she was working through at each stage of her story.
Each painting represents a key milestone in Amalia’s personal journey from diagnosis with AHP to treatment. To achieve the desired effect, it was important to capture the actual brushstrokes as they came down on the canvas.
Amalia’s Story is the first branded patient story told in the Captivate format. It demonstrates that innovation—whether it grows out of curiosity or necessity—always carries the potential for a massive enhancement of the audience experience. As of July 2023, 51k users have visited amaliasstory.com, they have had 257k interactions with the website’s content, and 2,200 of them have visited the site more than once. This suggests an excellent reach among the target population of patients, caregivers, and stakeholders within the AHP community. Amalia’s Story has also been featured in articles in USA Today and Endpoints, garnering attention within the industry.
