Genetic Alliance UK’s partnership with LifeArc
In 2024, LifeArc launched four Translational Centres for Rare Disease as part of a major £40M commitment to strengthening research on rare conditions over the next five years.
This network is made up of the LifeArc Translational Centres for:
- Rare Respiratory Diseases
- Rare Mitochondrial Diseases
- Rare Kidney Diseases, which was jointly launched by LifeArc and Kidney Research UK
- Acceleration of Rare Disease Trials
Each Centre brings together researchers, healthcare professionals and patient groups including Genetic Alliance UK member organisations to improve access to expert guidance, specialist facilities and training.
LifeArc, a UK-based life science medical research charity, supports the network via the ‘Hub’, which brings together LifeArc, Genetic Alliance UK and Beacon for Rare Diseases.
Together, we aim to support the Centres to identify and develop solutions to some of the barriers to innovation for new tests and treatments for people living with rare conditions in the UK.
The Hub has convened working groups to support representatives from each Centre to work together on this challenge and aims to:
- Share learning on best practices for patient and public involvement and engagement (PPIE) in academia
- Identify actionable policy research areas relevant to the Centres and the wider rare disease ecosystem
- Raise awareness and public profile of the Centres through strategic external communications
- Identify, develop and deliver training to the Centres and for the wider rare disease research ecosystem
- Facilitate knowledge sharing for specific data challenges/solutions
Genetic Alliance UK’s involvement in the hub
Some activities of the Hub will cut across working groups, taking advantage of the network between and expertise of the individuals involved. Each is seeking to make recommendations for change that complement the work led by other initiatives, such as the Rare Disease Research UK nodes, so that, collectively, we deliver a meaningful contribution to people living with rare conditions in the UK.
Genetic Alliance UK is contributing its expertise to working groups on policy, PPIE and communications.
Policy Working Group
Each Centre has reported experiencing a number of hurdles to progressing the development of innovative new tests, treatments and technologies for rare conditions in the UK. Medical breakthroughs like mitochondrial replacement therapy show the potential of UK-based translational research, but there is still a gap between their discovery and being made available to people with rare conditions via the National Health Service (NHS).
As 2025 is shaping up to be a pivotal year for UK health policy, we are supporting members of the Policy Working Group to reflect on recent updates to the wider policy landscape, including Genetic Alliance UK’s campaign to renew the UK Rare Diseases Framework, the NHS 10-Year Health Plan for England and the UK Government’s plan for the Life Sciences Sector. The next steps involve the Centres identifying which themes to take forward from this landscaping review into a policy report, which will be used to engage parliamentarians in the Hub’s work later this year.
PPIE Working Group
Genetic Alliance UK’s role in the Hub also seeks to ensure that the Centres are supported to deliver their PPIE plans, and that learnings from the initiative are communicated to the wider rare disease community. The new Hub Patient Engagement Group (PEG), made up of people with personal experience of rare conditions, also aims to integrate the broader rare community voice as the Centres’ work develops.
Communications Working Group
Our Communications Working Group role involves:
- Contributing to the design and delivery of communications strategies for Genetic Alliance UK and the Hub which align with overall project aims
- Ensuring that lived experience of rare conditions is centred via sourced case studies and personal stories
- Coordinating with Hub partners, Translational Centres and LifeArc to design and share communications through Genetic Alliance UK’s network and beyond
Our members will receive regular updates on this programme of work. If your organisation/patient support group isn’t yet a member of our alliance, you can read more about the benefits of Genetic Alliance UK membership on our website.
You can also learn more about the LifeArc Translational Centres for Rare Diesease on LifeArc’s website and follow Genetic Alliance UK on social media to stay updated on all our work.