Press release
Minister for Health launches public consultation to inform the development of the new National Rare Disease Strategy
From Department of Health
Published on
Last updated on
From Department of Health
Published on
Last updated on
The Minister for Health, Stephen Donnelly has launched a public consultation to inform the development of the new National Rare Disease Strategy . The results of this consultation will be considered by the National Rare Disease Steering Group which has been tasked with developing the strategy.
It’s estimated that around 300,000 people in Ireland are living with a rare disease. The new National Rare Disease Strategy will set out the vision for rare disease services in Ireland. A Patient Forum has been established to ensure that the voices and lived experiences of patients, carers and their loved ones are central to the formation of the new strategy.
The public will also have an opportunity to help shape its development through the public consultation.
Minister Donnelly said:
“This public consultation is an essential part of our commitment to ensure that the new National Rare Disease Strategy is informed by a broad range of perspectives from those across the rare disease community and beyond. I invite people to engage with this consultation to ensure that we deliver a strategy that responds to the needs of people living with rare diseases and prioritises improvements that will have the biggest impact on resources and services.
“Throughout my time as Minister for Health I have met with many patients and families dealing with the complex and challenging day-to-day realities of a rare disease. I am very aware that their difficulties are often heightened by a lack of information and research into these conditions, so I am determined that this new strategy will support the evolution of more targeted, specialised healthcare.
“I want to thank the many patients, family members and carers for their engagement in the development of the strategy to date, and I encourage people to take part in the public consultation to help shape a plan will ultimately improve the experiences of the 300,000 people in Ireland living with a rare disease.”
Chair of the Rare Disease Steering Group, Professor Cecily Kelleher said:
“The importance of public engagement in our processes cannot be overstated. Seeking input from the diverse range of stakeholders, including but not limited to the rare disease community, advocacy groups, and healthcare providers, allows us to develop a strategy that will be achievable, effective, sustainable, and responsive to the real experiences and needs of people living with a rare disease.”
Acting Chief Medical Officer, Dr Colette Bonner said:
“The first National Rare Disease Plan enabled Ireland’s participation in 18 European Reference Networks for Rare Disease, facilitating collaboration among healthcare providers on conditions that require highly specialised treatment, knowledge and resources.
“The updated strategy will continue to support this work, as well as supporting innovations in diagnostics, genetics and treatments. It is therefore vital that all those with an interest in this area can contribute their perspectives, so I am encouraging strong participation in the public consultation to ensure the development of a robust, patient-centred strategy.”
A rare disease is defined in Europe as a life-threatening or chronically debilitating disease affecting at most only 5 people out of every 10,000. However, there are more than 6,000 known rare diseases affecting up to 6 per cent of the total EU population. It’s estimated there are around 300,000 people in Ireland living with a rare disease.
The first National Rare Disease Plan 2014-2018 contained 46 recommendations focused on improving diagnoses, identifying centres of excellence and setting up dedicated rare disease treatment pathways. Achievements under this plan include the setting up of the National Rare Disease Office in the HSE, publishing a Model of Care for Rare Diseases, and participating in 18 of the 24 European Reference Networks which facilitate discussion among healthcare providers on complex or rare conditions that require highly specialised treatment, knowledge and resources.
For more information on the national steering group see here.