Muscular Dystrophy Society of Ireland GLC (Muscular Dystrophy Ireland)

Lobbying activity

The following activities occurred for this specific Subject Matter Area.

Submission (1)
Submission included: - access to treatments for all adults with SMA, and to emerging therapies for DMD; - implement approved newborn screening for SMA; - develop Early Access Treatment Programme and ensure infrastructure and workforce readiness for newly approved therapies. We urged the Committee to ensure that Ireland’s approach to rare disease policy, from newborn screening to medicine reimbursement is guided by transparency, timeliness, and compassion.

Designated public officials lobbied

The following DPOs were lobbied during this return period on this specific Subject Matter Area. These DPOs were involved in at least one of the Lobbying Activities listed above, but not necessarily all of them. As returns are specific to a Subject Matter Area the above Lobbying Activities may be associated with multiple returns.