Advocacy

MDI has established an Advocacy Committee made up of members, ensuring our advocacy work reflects the lived experience of people with neuromuscular conditions and their families. As part of developing a national advocacy agenda, the MDI team and the committee have been working together on a policy position paper across all areas of life that we can use as a live lobbying and campaigning tool. And we hope that self-advocacy training workshops planned for members in 2024 will support people to develop their skills and confidence, so they are equipped to support and drive local advocacy. Our advocacy in partnership with Spinal Muscular Atrophy (SMA) Ireland and Rare Diseases Ireland resulted in Spinal Muscular Atrophy (SMA) being approved for inclusion in Ireland’s National Newborn Bloodspot Screening Programme. This is particularly valuable in light of the potential of recently available new treatments to significantly improve outcomes through earlier diagnosis and treatment. And it’s MDI Annual Report 2023 Page 6 a massive milestone for the community, demonstrating the power of collaborative working for change. We will continue to collaborate with organisations and allied health professionals that share our goals, including umbrella organisations of which we are members, such as the Neurological Alliance of Ireland, Disability Federation Ireland, Rare Diseases Ireland and IPPOSI, the Irish Platform for Patient Organisations, Science and Industry, and we thank them all for their valuable work.

Check out the latestest news about MDI advocacy in our news section.