The move follows the UK’s adoption of the Council of the European Union’s 2009 recommendation that member states establish and implement their own national strategies for rare disease. The health departments will now consult a range of stakeholders, including the pharmaceutical industry, clinicians and patient advocacy groups.
The ABPI and, in particular, the ABPI Orphan Medicines Industry Group will respond to the consultation to ensure that the central, crucial role that medicines play in treating rare diseases is fully represented in the strategy.
Stephen Whitehead, Chief Executive of the ABPI, said:
“We welcome the commitment to a UK-wide national plan for rare diseases. It is important that this plan is genuinely effective and reflects the very specific needs of the rare disease community: the patients living with rare conditions; the clinicians working in this important area; and the pharmaceutical companies that work to develop the orphan medicines that are used to treat rare and serious conditions. We are currently reviewing the plan in more detail and will issue a fuller response to the consultation in due course.”
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Notes to Editors
The ABPI represents innovative research-based biopharmaceutical companies, large, medium and small, leading an exciting new era of biosciences in the UK.
Our industry, a major contributor to the economy of the UK, brings life-saving and life-enhancing medicines to patients. Our members supply 90 per cent of all medicines used by the NHS, and are researching and developing over two-thirds of the current medicines pipeline, ensuring that the UK remains at the forefront of helping patients prevent and overcome diseases.
The ABPI is recognised by government as the industry body negotiating on behalf of the branded pharmaceutical industry, for statutory consultation requirements including the pricing scheme for medicines in the UK.