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Shining a light on progressive supranuclear palsy (PSP) as a rare disease

Mark Hope, Patient Value Neurology & Europe/International Solutionsd
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Mark Hope, Patient Value Neurology & Europe/International Solutions
As we approach Rare Disease Day 2020, UCB are proud to reinforce our commitment to people living with progressive supranuclear palsy (PSP), and their families and loved ones.

The hummingbird is a symbol of PSP, representing how the brainstem of people living with PSP can appear on MRI scans. It is also an evocative reminder that PSP is a rare disease.

However, unlike the distinctive hummingbird, PSP is often difficult to identify by symptoms alone and is frequently misdiagnosed, often as Parkinson’s disease. This has led to a lack of awareness about what PSP actually is, and sadly many patients are not accurately diagnosed until after death.

People with PSP experience severely debilitating, neurodegenerative symptoms which worsen over time – including gaze palsy (an inability to move both eyes in a single horizontal or vertical direction) sleep issues, incontinence, trouble with swallowing and walking, as well as falls.1 There are no treatments available today to even slow the disease – only treatments that manage  symptoms to a limited degree.

This Rare Disease Day, UCB are proud to recognise and support people who are bravely living with rare diseases like PSP every day.

As part of our efforts to help improve the lives of patients, we are actively exploring whether one of our investigative medicines, an anti-tau antibody2 discovered in our research laboratories in Belgium, could provide a new treatment option for people living with PSP and other neurodegenerative diseases.

Our investigative medicine is already showing promise in preclinical studies, supporting our belief in its potential value for people living with PSP and other tauopathies (neurodegenerative diseases associated with the aggregation, or clustering, of the tau protein in the brain).2

We’re working to expedite its development as quickly as possible. As with many Rare Diseases, the small number of patients living with this condition means that identifying people to take part in clinical trials can be challenging. We are embracing innovative approaches to support recruitment, working closely with the patient advocacy and neurology community to take their perspectives on board with the aim of delivering a solution that addresses their needs.

Input from these stakeholders is critical to optimise how we work: delivering value to patients through meaningful outcomes and experiences is at the core of everything we do. We’re considering  how we can address some of the challenges faced by people with mobility issues in physically accessing treatment, and how we can better support these patients and their caregivers throughout their treatment journey.

UCB’s approach is to follow the science, listen to and learn from patients and to deliver breakthrough solutions in areas of high unmet medical need. Our approach to PSP, and other Rare Diseases, is no different.

The fight against neurodegenerative diseases, and especially PSP, is complex. However, in partnership with patients, caregivers, researchers, and healthcare professionals, all with a common goal to address unmet needs, we believe our “Inspired by patients, driven by science” philosophy will help shine a light on the journey towards the development and validation of new solutions.

1. To find out more about PSP, click here.
2. Read more about anti-tau antibodies in neurodegenerative diseases here.

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Posted by Jeannine Artois, 26 February 2020

Having my sister living with PSP, I feel particularly involved in all UCB can do to help these patients. I thank you so much for going ahead in this research and finally find something to help this REALLY debilitating disease ! A special thank you to Alex Klein