Finalist
When Collaboration Becomes Impact: The Seeds of Change Story
Summary of work
Seeds of Change was created to address a critical gap in understanding the lived experience of hypoparathyroidism – a rare endocrine disorder affecting just 14,000 people in the UK. With most endocrinologists and endocrinology nurses seeing only a handful of cases each year, clinical exposure was limited, with patients reporting a poor quality of life.
Ascendis identified a pivotal opportunity ahead of the 2025 clinical guideline update in hypoparathyroidism to ensure overall wellbeing was more prominently recognised in future management strategies.
Working with Parathyroid UK, patients, the Society for Endocrinology (SfE), and endocrine specialists, Ascendis built a unified national effort grounded in listening, visibility and improvement. Insights from a co‑created patient survey informed a bespoke butterfly mural – an artwork designed with a patient artist to visualise the burden of the condition. This installation became the centrepiece of stakeholder engagement: unveiled to patients at a hypoparathyroidism Facebook Party where the community could contribute their own digital butterflies, and showcased to clinicians at the BES conference as an ‘unfinished’ collaborative artwork that invited professional reflection. A suite of expert‑authored educational articles cemented momentum behind holistic care.
Ultimately, Seeds of Change secured stronger recognition of quality of life as a core management goal.
Judges’ comments
The judges really liked that the entry from M+F Health and Ascendis Pharma had engaged from a patient’s point of view. They liked the implementations and recognised that great outcomes achieved. It is also important to acknowledge, this was all accomplished on a low budget.
