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Genetic Alliance UK today launch a landmark Patient Charter that highlights the concerns patients have about the new approach the Government and NICE are using to determine whether or not medicines for rare conditions are made available through the NHS.

The Patient Charter is being launched at a breakfast meeting hosted by the Association of the British Pharmaceutical Industry (ABPI) and Bioindustry Association (BIA) at their headquarters in central London. The Patient Charter, which has been endorsed by 77 patient groups, sets out a list of recommendations to improve the way medicines for rare conditions are evaluated.

This is the first time so many patient groups have come together to set out a united case for change.The Patient Charter published by Genetic Alliance UK shows patients are concerned that, while greatly needed, the existing process is opaque, potentially disruptive to the wider NHS and risks downplaying the patient voice.

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