Rare Disease Day: Reflecting on our work in patient engagement

Each February, we join forces with the rare disease community to raise awareness for Rare Disease Day. For the 300 million people worldwide living with a rare condition, there is a critical need to advocate for equitable access to diagnosis, treatment, care and social opportunities.

That’s why, on 28 February, the Beyond team will be sporting stripey socks in support of Medics for Rare Disease. We’ll also be championing this year’s theme - ‘More Than You Can Imagine’ - which reflects both the scale of the challenges faced by people living with a rare disease and the potential for positive change when communities work together. 

At Beyond, we have gained a deep insight into what it’s like to live with a rare condition through the patient engagement work we conduct on behalf of our clients. We understand the importance of listening to people’s lived experiences in order to put their voice and needs at the very heart of our activity. Hence, our campaigns often involve talking and meeting with patients and their caregivers, collaborations with patient advocacy groups, and the creation of working councils featuring patient representatives. 

In this way, we gain a better understanding of the challenges – and hopes – of living with a rare disease, and the best way to support the patient community. Sometimes this involves creating powerful events that bring the patient community together for support and inspiration. In other instances, we develop patient-facing websites, social media campaigns and supportive assets, such as videos and guides to shared decision making. Through patient collaboration, we ensure that our activities are authentic, relatable and valuable. 

We are also experienced in working closely with pharmaceutical companies to help embed patient-centric thinking into their day-to-day functions. Our work here often centres on Rare Disease Day, using this awareness event to highlight the importance of the patient experience to pharma employees.  

This Rare Disease Day, we invite you to take moment to consider all those living with a rare disease.   

If you are interested in learning more about the Beyond team’s work, contact us at hello@beyondpr.com 

1. World Health Organization. (2025). Rare diseases: A global health priority for equity and inclusion. World Health Organization: Geneva, Switzerland.