Rare Diseases and Orphan Drugs

Summary of work

This animation was developed to raise awareness of the early signs and symptoms of Hunter syndrome (MPS II) among key referring physicians (ENTs and paediatric surgeons) and to highlight the importance of early diagnosis and management in this rare, life-limiting genetic disease. The key call to action is to refer a patient to a geneticist if Hunter syndrome is suspected. The infographic approach was taken to convey key prevalence data and emphasise the progressive nature of the disease. The video format was chosen to maximise accessibility and reach in the absence of reps on the ground. The original six-minute English language animation has been translated into Spanish and a shorter two-minute version has also been developed. All three animations are available on Shire’s disease awareness YouTube channel and have together accumulated >1,000 views over five months. The infographic was subsequently rolled-out across a number of static items, including a leave piece, roller panel and poster/digital display, which have been used at international congresses. Additionally, a reprint carrier with an integrated USB flashcard was developed and provided to referring physicians, directing them to a registration page where they could sign up to receive more information about the condition.

Judges' comments

This was a creative solution to the challenge of reaching people and one that was met with an enjoyable animation. It’s still early-days for the programme, but it clearly shows potential.