Rare Diseases: Medical Treatments
The question
To ask the Secretary of State for Health and Social Care, what discussions he has had with NHS England, the National Institute for Health and Care Excellence and the Medicines and Healthcare products Regulatory Agency on the annual meeting held to discuss progress and the role of the Early Access to Medicines Scheme, the Innovative Licensing and Access Pathway and the Innovative Medicines Fund in supporting access to treatments for people living with rare diseases.
Answered by Dr Zubir Ahmed
The Government is committed to improving the lives of people living with rare diseases through the UK Rare Diseases Framework. One of the priorities of the framework is improving access to specialist care, treatment, and drugs.
We have continued to review the effectiveness of the Early Access to Medicines Scheme, the Innovative Licensing and Access Pathway, and the Innovative Medicines Fund. These access pathways across the regulatory and access system are designed to support innovative treatments being made available earlier to patients who need them, including people living with rare diseases. The last meeting was held in July 2025, and included representatives from the Department, NHS England, the National Institute for Health and Care Excellence, and the Medicines and Healthcare products Regulatory Agency, as well as patient advocacy groups, industry, and clinical researchers. Further detail will be reported in the England 2026 Rare Diseases Action Plan, to be published in spring 2026.
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