Tuesday, 3 April 2012

Rare Diseases Consultation

It is good to see the National Consultation on Rare Disease Strategy for the UK in response to the European Commission recommendation from November 2008 picks up on many of the ideas and suggestions that have been developed by the Kidney Community as part of the rare diseases strategy and the establishment of RADAR (Rare Diseases Registry) by the Renal Association and Renal Registry.

There seems to be consensus that focusing on the needs of patients, who are the real experts in living with a rare disease, is central to success. This is the key to organizing services, expert centres, information systems, and clinical care and research around the needs of the individual. These networks can then promote early detection, offer more support, improve patient, family and carer experience and begin to answer more of both biomedical and psychosocial questions that are the foundation of better outcomes. 

The devil as ever is in the detail and while the Kidney Community is leading the way, strong commissioning and careful implementation will be necessary to realise the benefits of care outcomes that are now in reach.

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