Our manifesto sets out a clear vision for change, highlighting the action needed to ensure that everyone in our community can live well with their condition and access future treatments when they become available.
Despite exciting scientific progress, with one treatment already licensed for a small number of people, there is still a long way to go. Too many individuals and families face delays in accessing genetic testing, counselling and specialist care. Others struggle with the emotional and practical impact of sight loss without clear pathways for support. At the same time, research into new treatments is hampered by fragmented data and limited investment in comparison with other major disease areas.
Retina UK is determined to change this. We are actively engaging with government, health regulators, the NHS, eye health professionals, the life sciences industry and many other partners to make sure the needs of the IRD community are understood and addressed. By working together, we can create the right conditions for research and innovation to thrive, while ensuring that people living with inherited sight loss have access to the services, support and opportunities they need.
Our manifesto centres on four key priorities:
- Investment in Research and Development The UK has the potential to be a global leader in cell and gene therapy research, attracting clinical trials and driving innovation. We are calling for increased and sustained funding to accelerate the development of treatments, foster a more attractive environment for research, and ensure that people with IRDs gain early access to new therapies.
- Workforce Investment Delivering advanced therapies requires a highly skilled NHS workforce, from clinicians to data specialists. Long-term planning, training and recruitment are essential to ensure the NHS is ready to deliver cutting-edge treatments and to meet the growing demand for specialist eye care.
- Enhanced Data and a National IRD Registry A robust evidence base is vital. Through a national patient and clinical registry, we can gain a clearer understanding of the prevalence and impact of inherited sight loss, improve access to clinical trials, and provide researchers with the high-quality data they need to drive progress and innovation.
- A Health and Social Care Pathway for Progressive Sight Loss Inherited sight loss brings unique and evolving challenges. A dedicated pathway is needed to provide clear information, practical and emotional support, and coordinated care at every stage of life. This will help reduce inequalities, improve wellbeing and enable individuals and families to plan with confidence.
By pursuing these priorities, Retina UK is working to ensure that people affected by inherited sight loss have hope for the future as well as the support they need today.