Unite4Rare: Sobi strengthens commitment to patients and caregivers with updated tracking
Today, Sobi announces an important update to Unite4Rare - our long-standing commitment to the patient and caregiver community. The update sets out clearer expectations, and outlines what has been done so far and how we will measure progress into the future. It also introduces revised Key Performance Indicators (KPIs), along with a new internal tracking system to monitor progress.
Co-created by internationally renowned patient community leaders and senior leadership within Sobi, Unite4Rare builds on Sobi’s history of specialised expertise in rare diseases and patient engagement, taking it to the next level. It demonstrates our dedication to making a positive impact by clearly outlining what patients and caregivers can expect from us.
A continued commitment to partnerships
“Patients are not just participants in healthcare – they are partners”, comments Donatella Decise, Global Director Patient Engagement. “This update reflects Sobi’s ongoing commitment to listening and evolving alongside the communities we serve. It also helps us stay accountable to what matters most: making a meaningful difference for patients and caregivers.”
Updated KPIs focus on impact
The revised KPIs are designed to better assess the quality and consistency of patient engagement across the organisation. They focus on:
- Earlier and ongoing patient involvement in research and development
- Measurable outcomes from engagement activities
- Clear feedback loops to ensure patient insights shape decision-making
These enhancements were based on input from patient representatives and internal teams, helping ensure the measures remain practical and relevant.
New tracking system to support delivery
To support the delivery of these commitments, Sobi is also launching a new internal Unite4Rare Tracker. This tool will help teams to monitor progress, share best practices and identify areas for improvement.
The system will:
- Provide visibility of patient engagement activities across the organisation
- Track progress against KPIs
- Support more informed decision-making
- Encourage accountability and continuous learning
Sobi extends its sincere thanks to the patient representatives and colleagues who contributed to the update. Looking ahead, we will continue to review and evolve Unite4Rare to ensure it delivers meaningful outcomes for patients and caregivers.
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