Vicky McGrath
CEO, Rare Diseases Ireland
Ireland’s new Rare Disease Strategy will be shaping better care through patient partnership. Learn how this plan will drive real change for those living with rare diseases.
Over the coming weeks, a new national strategy for rare diseases in Ireland will be published. The National Rare Disease Strategy (2025–2030) has brought together the expertise of a wide range of stakeholders to develop and shape a strategy that will drive change in the provision of care for people living with rare diseases in Ireland.
Sustainable impact for people living with rare disease
The driving motivation of this strategy is to provide care that will enable people living with rare diseases and their family members to reach their full potential and live their best lives. The achievements of the last National Rare Disease Plan (2014–2018) are numerous, but much more needs to be done to have a real and sustainable impact on the lived experience of those living with rare diseases.
This strategy has been developed with the voices of people living with rare diseases at its heart. The Rare Disease Patient Forum has over 100 members who have contributed through online and in-person workshops. The Public Consultation had over 500 responses from individuals living across Ireland and a further almost 100 responses from organisations, including patient advocacy groups, medical organisations, public health groups and industry.
This strategy has been developed
with the voices of people living
with rare diseases at its heart.
Implementation plan development
Following publication of the strategy, the next step will be development of an implementation plan before the summer. The implementation plan will identify priorities and actions to be addressed in the short and medium term. As we have secured some funding for implementation, we are on track to commence implementation over the course of the year. It is an exciting time to be involved in the rare disease space in Ireland.
Partnership in an evolving health system
Patient partnership is a relatively new concept in the Irish health system. It helps to shape evolution of the health service to meet the needs of those with lived experience of service delivery today by proactively engaging with them in prioritising, planning and implementing change.
It has been a key element of development of the new rare disease strategy and will continue to play a vital part in implementation and monitoring into the future. Partnership will ensure that we prioritise the needs of all people living with rare diseases and ensure that we learn quickly what is and is not working in communities and health regions across Ireland.
