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Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

Posted by
Kate Trenam, Patient Engagement - Early Research

With immense pride and humility, UCB’s Patient Engagement Council for Parkinson’s Research (PECPR) initiative has been selected as a winner of the second edition of the Made with Patients Awards. “Made with Patients” is the first global award celebrating innovators in patient engagement. Hosted by Patient Engagement for Medicine Development (PFMD), the award recognizes outstanding contributions across medicine development, MedTech, digital health sectors, and more. It recognizes over two years of dedicated work in Parkinson’s by UCB and our partners, Parkinson’s Foundation and Parkinson’s UK.

For UCB, this also serves as a moment to reflect on our ongoing mission to transform care for those living with Parkinson’s.

The Challenges for Patients
The journey for patients with Parkinson’s is fraught with challenges, beginning with the often prolonged and complex diagnostic process. The odyssey from first symptoms to diagnosis can be a harrowing experience for patients and their families, marked by uncertainty and frustration.

Once a diagnosis is made, the road doesn’t get much easier. Current treatments primarily focus on managing symptoms1 without truly altering the disease's relentless progression. While these treatments provide necessary relief, they represent a compromise, not a victory, in the battle against Parkinson’s.

“The experience with the PECPR demonstrates that patients can make an impactful contribution to prioritization, planning, and programming of research.  The Council created an open and constructive atmosphere attributing equal weight to the views of everyone participating. PECPR being awarded the Made with Patients award further encourages industry and patient organizations to see us for who we are,” said Marc van Grieken, Parkinson’s patient advocate.

The Path Less Trodden
At UCB, we have dared to challenge the status quo, driven by a belief that patients deserve more than symptomatic relief. This paradigm shift demands innovation, courage, and an unwavering commitment to scientific excellence. Our vision extends beyond the current landscape of treatment, aiming to pioneer therapies that can slow down or even halt the progression of these debilitating conditions.

The Importance of Partnership
Central to our approach is the principle of partnership, particularly the involvement of patients at every stage of drug development. This collaborative ethos is reflected in our alliances with industry leaders and research institutions, which amplify our capabilities and accelerate our progress towards transformative treatments.

Our partnership philosophy extends to include the most critical stakeholders of all—the patients themselves. From the early stages of research through to clinical trials and beyond, we integrate the patient voice into every facet of our work. We aim to work as true trusted partners with patients. This patient-centric approach not only enriches our understanding but ensures that our innovations truly meet the needs of those we serve.

“It is critical to the Parkinson’s Foundation to engage people with Parkinson’s as partners in everything we do. We are proud to be part of this council which puts the voice of people living with the disease at the forefront,” said John Lehr, President and Chief Executive Officer, Parkinson’s Foundation.

“Parkinson's UK is immensely proud of its longstanding partnership with UCB, Parkinson's Foundation, and the Parkinson's patient community. Our collaboration via the PECPR, showcases how industry, patient organisations and the patient community can work together towards positively impacting research for the benefit of the Parkinson's community,” said Nikul Bakshi, Research Involvement Manager, Parkinson’s UK.

Looking Forward
The path to a new treatment paradigm is long and fraught with challenges, but the Made with Patients Award serves as a beacon of encouragement, illuminating our way forward. It is a testament to the dedication of our teams and more importantly, the patients who have been involved in PECPR, including those who are no longer with us. This award serves as a reminder of the lives we strive to improve, and a spur to continue our pursuit of excellence.

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