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Policy for appraising orphan and ultra-orphan medicines, and medicines developed for rare diseases

In May 2013, Welsh Government established a Group to review the process and parameters used by AWMSG for appraising orphan and ultra-orphan medicines in Wales.  This Group recommended changes be made to the way medicines for rare diseases are appraised in order to give patient groups and clinicians a stronger voice in AWMSG decision-making.  A new group has been established, the Clinician and Patient Involvement Group (CAPIG), to identify and discuss in more detail any additional benefits the medicine may have from both a clinician and patient perspective

A pilot of the new process has run from January 2015 until the end of August 2015. At their meeting in September 2015 AWMSG endorsed the new process and the following documents:

Process for appraising orphan and ultra-orphan medicines and medicines developed specifically for rare diseases

Clinician and Patient Involvement Group (CAPIG) Information

CAPIG Terms of reference