Finalist
Seizing a Rare Opportunity: Uniting the Lipodystrophy Community to Redefine Care
Summary of work
Lipodystrophy, an ultra-rare and profoundly under-recognised disease, often takes years to diagnose. Many clinicians will never encounter a case, and those who do have historically lacked clear guidance on how to manage it. Until recently, there was little consensus on best practice, sporadic collaboration between experts, and no widely available resources for patients.For Chiesi, the status quo was simply not acceptable. Targeting a transformative shift, we embarked on a programme of work to ignite urgency, unite global experts, and ensure patient perspectives illuminated every phase of care. Coalescing leading clinicians and patient advocates, we created the first global consensus on lipodystrophy care, culminating in a results-oriented Rapid Action Plan with clear, practical recommendations to bolster earlier recognition and standardise clinical practice. To drive implementation, we developed targeted educational tools – including cutting-edge digital avatars and incisive clinical case studies. This has armed clinicians with the tools needed to more effectively detect, diagnose, and manage lipodystrophy.Even in an ultra-rare condition, our impact is already evident: a published global consensus, increased clinician engagement, and real-world diagnoses testify the progress made.We have laid a robust foundation for lasting change in how lipodystrophy is understood and managed by HCPs across the globe.
Judges’ comments
The visuals for this entry from Chiesi EMEA and JPA Health were an excellent co-creation with PAGS and KOL’s! It was creative and impactful, demonstrating a meaningful change in patient care. A lovely example of the power of pharma.
