The legal imperative for treating rare disorders

  title={The legal imperative for treating rare disorders},
  author={Hanna I. Hyry and Jonathan C. P. Roos and Jeremy Manuel and Timothy Martin Cox},
  booktitle={Orphanet journal of rare diseases},
BACKGROUND Life-saving orphan drugs are some of the most expensive medicines. European Union governments aim to accommodate their provision within stretched healthcare budgets but face pressure to reduce funding of such treatments. Patients struggle to retain or gain access to them as their special status is questioned, causing distress and in some cases, fears of premature death. In the UK and EU reimbursement and pricing model of drugs, and orphan drugs in particular, is being re-evaluated… CONTINUE READING
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