Cancer52 published its briefing paper on the UK Strategy for Rare Diseases.
Detailed national implementation plans from all four nations in response to the Strategy were due for publication later that week on Rare Disease Day (28th February 2014).
More than 80 per cent of Cancer52's 74 member organisations[1] work with rare cancers, ie one that affects five people or fewer in 10,000[2].
As such one of Cancer52's key asks within the statement is that Cancer52 be represented on the Department of Health Rare Diseases Stakeholder Forum Group.
To read the full press release click here.
[1] Source Cancer52 member survey February 2014
[2] A rare disease is a life-threatening or chronically debilitating disease that affects 5 people or fewer in 10,000 and requires special, combined efforts to enable patients to be treated effectively.