Pyruvate kinase (PK) deficiency is a rare genetic disorder characterized by red blood cells breaking down too quickly, resulting in a range of symptoms including weakness, fatigue, and jaundice. Symptoms can be variable and affect people very differently—in some cases, PK deficiency can be life-threatening at birth, while others may have mild or no symptoms and go undiagnosed until adulthood.
The effects of PK deficiency can be life-altering, physically debilitating, and emotionally draining, impacting people in diverse ways throughout their lifetime. It can affect people across different stages of life, socioeconomic backgrounds, and levels of home and community support. People living with PK deficiency rarely meet another person with this condition, and often rely on social media as an outlet to feel less alone and isolated.
Agios brought together a diverse group of people affected by PK deficiency, featuring people at various stages of life, who received diagnoses at different ages, who have experienced PK deficiency at varying degrees of severity, and caregivers of individuals with PK deficiency. We captured them sharing their experiences in hopes of showcasing real diverse PK deficiency experiences to:
(1) highlight the impact of connecting with someone affected by the same rare disease
(2) capture similarities and differences real people have experienced living with or caring for someone living with PK deficiency, speaking to the variability associated with this disorder and helping viewers feel less alone or isolated
Because each person who is affected by PK deficiency experiences the disease differently, it was crucial to partner with a variety of advocates representing different ages, backgrounds, and experiences.
To execute a successful video series, we took the following approach:
In order to inspire, encourage, and support others affected by PK deficiency, the footage captured that day was turned into the “Diverse Experiences” video series, and episodes were released via the Know PK Deficiency YouTube channel. Both the entire series and individual episodes were promoted on the Know PK Deficiency Instagram, Facebook, and X (formerly Twitter) pages.
The final videos produced as part of this unique “Diverse Experiences” series are a stunning and powerful representation of how truly meaningful it can be to bring together members of a rare disease community. The comfort they felt hearing people going through similar experiences, as well as the knowledge they felt they walked away with from hearing others’ experiences with PK deficiency, is evident across the series.
Most importantly, once the video series launched on the Know PK Deficiency YouTube channel and social media channels in February 2023, it was clear that this creative approach was highly valued among the PK deficiency community, resulting in:
Overall, it was incredible to see how this creatively distinguished campaign made such an impact in driving support and awareness within the rare disease community and beyond.
