How adopting shared decision making can transform patient care in rare disease

For people living with hereditary angioedema (HAE), daily life is shaped by unpredictability. Attacks arrive without warning, plans dissolve instantly, and painful flare-ups can last for days on end. Fewer than 1,500 people in the UK have the condition, but it profoundly affects their ability to lead ‘normal’ lives and can impact people’s mental health. 

For years, rare disease care has been described as “complex”. The truth is simpler: what people need is not more leaflets, more webinars, or more well-meaning campaigns arriving after decisions have already been made. What changes care is a real partnership between HCPs and patients built deliberately, sustained consistently, and centred on the people living with HAE every day. 

That was the ambition behind the Power of Partnerships  initiative, bringing together BioCryst, HAE UK, NHS clinicians and ZPB Associates with one shared goal: to improve not just how care works, but for patients to share the life-long journey of living with the disease with a clinical team.

As an HAE patient put it, “Sharing decisions with my consultant has changed my life dramatically.” 

The difference she describes is profound. Rather than appointments being something that simply happen to you, they become sessions that are tailored for you. This marks a fundamental change in approach, and it means that patients take an active role in their care, transforming care from a transactional process into a collaborative one. That transition, placing emphasis on genuine partnership and shared decision-making, became the very foundation of the programme. 

Partnership as a method 

The programme was built on engagement with patients, clinicians and the patient advisory group, HAE UK.  

Unsurprisingly, the campaign drove exceptional engagement.  In a survey, 92% of consultant immunologists  found the materials helpful - a powerful validation of co-created resources.  And crucially, 62% of clinicians reported positive changes in their patient interactions, signalling a shift not just in materials used but, in the behaviours, shaping care itself. 

Digital engagement mirrored the appetite for new approaches: following launch, Google searches rose 100% for “shared decision making” and 45% for “hereditary angioedema,” reflecting broader awareness and interest in collaborative care. 

The logic at the heart of ZPB’s approach: start with insight, build evidence, craft the narrative, then deliver materials that shift behaviour not just awareness. 

Power of Partnerships recently won Partnership Project of the Year (Pharmaceuticals) and a Highly Commended award for Multi-Sector Partnership of the Year at the 2026 Excellence in Healthcare Partnership Awards. Read more about it in Our work.