Using insight to engage patients with a rare disease

In the year leading up to the launch for a novel treatment of a rare disease in an area of high unmet need, our client wanted to ensure the treatment was available to those most in need, so we carried out targeted, in-depth patient engagement to gain a better understanding of life with the disease from the patient and carer perspective.

  1. To understand the burden of disease and experience of current treatments
  2. To understand the priorities amongst patients (and carers) in relation to their condition – what are their main challenges, what would they like to change, how they are currently addressing these priorities and what more could be done as individuals and as a community

We held a two-part patient advisory board attended by 11 patients and caregivers. Using engaging materials and workshop techniques, we facilitated a lively and informative discussion, which gave us insight into the challenges of living with the condition, and where the areas of unmet need lie.

“ZPB are personable, pro-active, fast response, good knowledge and understanding of clients requirements. Very easy to deal with, quick to action, high level of detail. Keep up the good work!”

Commercial Director UK & Ireland

We used this in-depth insight to inform marketing materials which were tailored to addressing the areas with the most need, which were used to raise awareness of the life-long burden of the disease amongst multiple stakeholders to ensure that patients are properly identified and treated with their best interests in mind. The patient engagement activity allowed us to capture the experience of patients struggling to cope with the unpredictability of their disease how it will progress across their lifetime. 

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