WLHCC PPV Group Publishes 'Milestones' Report

WLHCC PPV Group Publishes 'Milestones' Report 1 Dec 2025

The Patient and Public Voice (PPV) Group for the West London Haemoglobinopathies Coordinating Centre has released its Milestones report, following the inspiring event held in August 2025. The gathering celebrated resilience and shared wisdom across generations, focusing on what it means to age with Sickle Cell Disorder (SCD)—a milestone once thought impossible.

The event brought together patients, carers, and advocates for heartfelt discussions and storytelling. Elder speakers shared candid stories about navigating health, family, and identity, while breakout sessions fostered honest conversations on planning ahead, mental wellbeing, and community support. Feedback was overwhelmingly positive, with attendees calling the day “warm, empowering, and deeply needed.”
The report highlights key recommendations: expanding peer mentorship, creating age-specific services, and promoting holistic health and financial planning. These insights will shape future projects aimed at improving care and confidence for older adults living with SCD.

As one participant shared, “We’re not just surviving—we’re thriving.” With continued collaboration and patient-led innovation, the PPV group is paving the way for a future where aging with SCD is met with dignity, hope, and celebration.

Please find the report here: PPV Milestones Report

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