On Tuesday, BIVDA attended a joint event organised by the All Party Parliamentary Groups for Life Sciences, and for Rare, Genetic and Undiagnosed Conditions. The central topic of the event was the implementation of the ‘UK Rare Diseases Framework’ and the adjustment of this legislation in relation to patient needs and greater understanding of rare diseases.
While the population of an individual rare condition is small, there are over seven thousand identified rare conditions. Consequently, 1 in 17 people will be affected by a rare condition at some point in their lives, equating to around 3.5 million people in the UK.
Various MPs and stakeholders attended the online event. Speakers included Liz Twist MP (Chair of the APPG for Rare, Genetic and Undiagnosed Conditions), Nick Meade (CEO of Genetic Alliance UK), Jon Neal (Managing Director of Takeda UK) and Victoria Barret (Head of HTA and Market Access at ABPI).
The UK Rare Diseases Framework, released in January 2021, sets out a vision for the future of rare disease policy. The meeting served as a chance to discuss the development of the Government Action Plans that will implement the UK Rare Diseases Framework, which will be announced at the start of 2022. These action plans are vital in leading to systematic change so that people with rare conditions are given the care that they need. Individuals living with rare diseases had an opportunity to speak on the call about their conditions and to share experiences of receiving clinical treatment and support.
BIVDA will be working to support further APPG for Life Sciences events on the 2022 workplan as part of its secretariat role, alongside ABPI and BIA. The crucial role of diagnostics and opportunities for industry collaboration and innovation will be highlighted as part of BIVDA’s continued APPG engagement.