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Rare Retinal Disease
23 January 2025
Lead MP
Jim Shannon
Strangford
DUP
Responding Minister
Karin Smyth
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Word Count: 8564
Other Contributors: 5
At a Glance
Jim Shannon raised concerns about rare retinal disease in Westminster Hall. A government minister responded.
Key Requests to Government:
Supporting access to new innovations that can improve diagnosis, treatment, and care for rare retinal diseases should be a priority for the Government and their relevant agencies.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
Only 25,000 people across the UK suffer from the condition but it affects 25,000 people and families. The cost of IRDs in the UK is £523.3 million, including wellbeing costs of £196.1 million and total economic costs of £327.2 million.
Edward Argar
Con
Melton and Syston
The right hon. Member acknowledged the importance of eye health and highlighted his personal experience with a minor eye injury, emphasizing the potential life-changing impact of more serious conditions.
Jim Shannon
DUP
Strangford
Thanked everyone who took part in the debate, highlighted personal stories of individuals affected by rare retinal diseases, and acknowledged the contributions of other MPs and the Minister.
Shockat Adam
Ind
Leicester South
Explored the devastating impact on families when a mother-to-be is diagnosed with Stargardt disease, highlighting the need for regulatory bodies such as NICE to collaborate with pharmaceutical and medical companies. The hon. Gentleman shared insights about eye trauma and gardening risks, supporting the debate's focus on raising awareness for rare eye diseases and their societal impacts. Discussed the challenges in making new gene therapies affordable for patients.
Steve Darling
Con
Torbay
Discussed his own experience of being diagnosed with Stargardt disease 45 years ago and the impact on employment opportunities, noting that 75% of people registered blind are unemployed. Brought a measured and knowledgeable approach to the debate on rare diseases.
The Minister for Patient Safety
Maria Caulfield
Acknowledged the impact of rare diseases on patients and families, highlighted government commitments to improving diagnosis and care through the UK rare diseases framework and annual action plan.
Government Response
Karin Smyth
The Minister for Secondary Care
Government Response
Thanked Jim Shannon for securing the debate and acknowledged the expertise of other Members. Mentioned that Andrew Gwynne will write to hon. Members about any outstanding issues. Discussed the Government's commitment to tackling rare inherited retinal diseases, highlighted NICE’s approach to evaluating treatments, mentioned progress in genomic diagnosis and research funding, and outlined measures to improve early diagnosis and care through digital connectivity.
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Assessment & feedback
Summary accuracy
About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.