Excellence in Rare Diseases and Orphan Drugs

Summary of work

HS is complex, chronic and disabling. Painful, foul-smelling, deforming lesions cause irreversible skin damage and lead to absenteeism, depression and isolation. On average, patients remain undiagnosed for more than seven years. Patients are seen by non-specialists who do not recognise HS or the need for a multidisciplinary approach, cycle patients for years on ineffective antibiotics without disease assessment, and wait until major surgical intervention is needed to remove severe lesions and scarring.

With HUMIRA® obtaining orphan drug designation, care standards and outcomes could improve, but there was a need to build expertise and confidence amongst dermatologists.

EIDON was established to develop a specialist network and increase the number of specialist centres to advance outcomes. Using the latest academic thinking, EIDON defined specialist behaviours, mapped barriers to change and worked with global leaders to develop small-group, practical, in-clinic training. A flexible approach addressed variations in global clinic models and a tailored agenda addressed delegates’ barriers.

The impact was outstanding! Of 62 delegates, 26 are establishing new centres, advancing quality of care in ~7,200 patients per year. EIDON’s unique format is a powerful influence on clinical practice, creating a global specialist network and increased access to care, which will improve the lives of many.

Judges' comments

The EIDON project took a whole programme approach, building awareness from zero to create a network and care delivery infrastructure. It is a clearly-structured entry with key behaviours and outcomes defined and measured. And most important, an impressive number of patients were treated.