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Late-Onset Pompe Disease Stakeholder Meeting

Page last updated: 7 November 2014

 A stakeholder meeting was held on 9 October 2014 to discuss the development of eligibility guidelines for the subsidised treatment of Late-Onset Pompe Disease with alglucosidase alfa (Myozyme ®), should subsidised access be made available.

The stakeholder meeting outcome statement summarises discussions regarding criteria for initial treatment, how the benefit gained by patients in response to treatment would be assessed, and criteria for continuation of treatment.  Participants indicated a willingness to participate in further consultation.