Finalist
SEE ME, HEAR ME: Transforming the patient experience of ANCA-associated vasculitis
Summary of work
Having a rare disease is difficult, but it’s even worse when the threat is unseen. People with ANCA-associated vasculitis (AAV) may appear healthy but are under attack from their own immune system. With a high acute mortality risk, but a long road to diagnosis and a complex treatment pathway, people with AAV and their carers often feel that insufficient community resources exist to support them through this extremely challenging journey.
SEE ME HEAR ME empowered AAV patients by giving them access to the resources they needed to better understand their condition and help them speak confidently with their healthcare professional. Unique partnerships were forged with multiple patient associations across Europe, allowing content to be created not just for, but by, AAV patients – truly reflecting the often-forgotten patient voice.
Since launching, more than 125,000 people have visited myANCAvasculitis.com, the central hub of the campaign (currently available in seven languages), with 14.5k recorded through-plays of the patient videos, and 31.4k total minutes viewed on Facebook. Wíth a 97% approval rating of the patient materials recorded in a survey of 300 members of a German vasculitis patient association, the campaign has delivered greater awareness and understanding of the patient experience in AAV.
Judges’ comments
The SEE ME, HEAR ME entry was very well-written, with strong media results in a rare disease area. Working with a person with ANCA-associated vasculitis really brought the entry to life. They identified an unmet need and put together a campaign that was inspirational, excellently executed with a fine set of metrics to support their objectives.

