Genetic Alliance UK welcomes the appointment of Sharon Hodgson MP as Parliamentary Under-Secretary of State in the Department for Health and Social Care. Under this portfolio, the Minister will be responsible for rare diseases. Ms Hodgson has served as a Member of Parliament since 2005 and has held a number of health-related roles during that time, including as Shadow Minister for Public Health. We welcome her to the post and look forward to engaging with her in her new responsibilities.
Ms Hodgson’s parliamentary record includes involvement in a number of All-Party Parliamentary Groups relevant to the genetic and rare conditions community, among them those covering medicine and medical device harm, Usher syndrome, haemophilia and less survivable cancers. This experience of health issues that directly affect our members provides a useful foundation for her new ministerial brief, and Genetic Alliance UK hopes it will inform her approach to the priorities of people living with rare and genetic conditions.
We look forward to establishing a productive working relationship with the new Minister and her team. There is important work ahead on diagnosis, access to treatments, and the translation of the genomics agenda into tangible benefits for our community. We will be seeking an early meeting to discuss these priorities and hope to work constructively with her throughout her tenure.
Thank you Ashley Dalton
We are sorry to hear that Ashley Dalton MP has stepped back from her role as Parliamentary Under-Secretary of State for Public Health and Prevention. She had served in this role from 10 February 2025 to 2 March 2026. Under this portfolio, Ms Dalton held the responsibility for rare diseases. Read Ms Dalton’s statement on her resignation.
Ms Dalton has been an outstanding advocate and a genuine friend to the rare conditions community. We were absolutely delighted that Rare Disease Day 2025 was one of her very first engagements as Minister, a signal from the outset of just how seriously she took the health challenges facing our community.
Under her leadership, the UK Rare Diseases Framework received an important extension until 2027, ensuring momentum to deliver important actions for people with rare conditions was not lost and to provide the rare community with an opportunity to consider what a future UK wide policy for rare conditions could look like.
As Minister, Ms Dalton also oversaw the delivery of two action plans for England. Included in this work, action plans are being developed to address geographic inequities and variation in access to NHS England’s highly Specialised Services. In 2025 NHS England also delivered a toolkit for highly specialised services which looks at five strategic priorities for tackling healthcare inequalities.
Additionally, in efforts to capitalise on technological advancements for the rare conditions community, an operational framework for individualised therapies in the NHS was launched last year and will begin development this month.
We were honoured that one of her last events as Minister was to join us for Rare Disease Day 2026 to launch the latest Rare Disease Action Plan for England. We are grateful for the time Ms Dalton spent speaking directly with members of our community and for her excellent speech. We are encouraged by the commitment she showed to our community, and her positive words about the future of the framework are something we will carry forward with confidence.
Nick Meade, Chief Executive of Genetic Alliance UK said ‘We’re tremendously grateful to Ashley Dalton for her contribution as a minister for rare diseases, for spending time with people living with rare conditions and the people that support them, and for keeping up the momentum of the UK Rare Diseases Framework, which is so crucial to making progress for the 7,000 people living with rare conditions. Thank you.’
What happens next for the UK Rare Diseases Framework?
The UK Rare Diseases Framework has been extended by one year. This is a vital step and ensures continuity in rare conditions policy for our community. This extension means each nation can continue to deliver their Rare Diseases Action Plan, driving improvements in care for people with rare conditions and building on the foundations established over the last five years.
Genetic Alliance UK, alongside a network of partner organisations, is proud to be leading a nationwide programme of engagement events throughout 2026. These events are designed to bring together the full rare conditions community and create space for open conversation, shared learning, and meaningful collaboration.
Whether you are living with a rare condition yourself, caring for someone who is, or working in healthcare, research, policy, or industry, your perspective matters. Every voice has a role to play in shaping a future where people affected by rare conditions receive the support, recognition, and care they deserve.
Register today to stay informed and get involved.
