Delivering true value for people living with rare diseases comes from partnership and innovation

We need to get closer to patients’ needs to achieve the right solutions for them. When we talk about patient value in rare disease what do we mean? The long-term question can’t be about how we get every single patient to try one particular medicine in a broad-sweeping approach.

That won’t deliver the right answers. As an industry, we need to ask how we can be more precise in the way we engage with these communities to meet their needs. What insights can we learn, what are the lived experiences patients face every day, what are the improvements that could tangibly improve their lives. It’s about understanding that each person living with the disease is an individual and our job is to help them get to the right medicine or solution, quickly.

Achieving true value for the community with our solutions is only possible with a strong foundation of partnership. Across the pharma and healthcare sector, it is common to talk about patient-centricity and partnership – indeed, this is a basis for all our interactions. To generate meaningful change, however, this needs to be more than just words on paper.

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