The National Rare Disease Office (NRDO) is pleased to launch an Expression of Interest (EOI) process seeking Patient Partners to participate in implementation of the National Rare Disease Strategy 2025-2030. Patient Partners will contribute to National Rare Disease Strategy Workstream Groups and the Patient Partnership Forum, working alongside patient advocacy organisations, clinicians, researchers, healthcare professionals, policymakers, and other stakeholders to help shape and inform implementation of the Strategy.

MDI welcomes the HSE’s decision to approve reimbursement of Skyclarys (omaveloxolone) for eligible adults living with Friedreich ataxia in Ireland. This decision comes after months of campaigning which saw the whole community come together, with people across Ireland getting behind the campaign and supporting people living with Friedreich ataxia and their families.

MDI is delighted to share an important update in our campaign for equal access to treatments for adults living with spinal muscular atrophy (SMA).