Winner
Improving Outcomes for Rare Disease Patients - the Hypophosphatasia (HPP) Disease Awareness Campaign 2015
With support from: Complete HealthVizion
Summary of work
HPP is a highly debilitating, rare, genetic disease; typically fatal in the youngest patients. Early diagnosis is critical. Unfortunately, many rare disease patients struggle for >five years before being correctly diagnosed. For some patients with HPP, this may mean the difference between life and death.
With the guidance of experts, the HPP Disease Awareness Campaign set out to save lives by quickly and effectively educating a wide range of HCPs on the impact of HPP and the need for rapid, accurate diagnosis.
Through a series of interlinked activities, we have reached over 200 HCPs, with an average 17% increase versus 2014 in HCPs from the ‘top 5’ EU countries reporting an overall increase in HPP knowledge. The SHaPE (Supporting Hypophosphatasia and Physician Education)meeting provided an in-depth, interactive, educational experience for HCPs from across the EMEA region, reaching 140 HCPs, with a massive 93% reporting an increase in diagnostic capability.
Importantly, we observed a four-fold increase in patients with HPP identified versus 2014 as a result of our campaign. That’s great news for patients, and a fantastic start.
Alexion’s campaign continues in 2016, and we are working with HCPs to reduce delays in diagnosis and to improve the patient journey.
Judges’ comments
The clarity of the insights into the underlying issues allowed the team to run a programme that achieved significant change in healthcare providers understanding of a rare disease, resulting in a rapid and significant improvement in diagnosis. They also learned how to further improve the programme for 2016.
