Minister for Health marks first meeting of Patient Forum to support development of the National Rare Disease Plan
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From: Department of Health
- Published on: 14 February 2024
- Last updated on: 12 April 2025
The Minister for Health Stephen Donnelly has marked the first meeting of the Patient Forum which will contribute to the creation of the new National Rare Disease Plan.
It follows the establishment in December of the National Rare Disease Steering Group tasked with developing the new plan.
It’s estimated that around 6% of the population or 300,000 people in Ireland are living with a rare disease.
The new National Rare Disease Plan will set out the vision for rare disease services in Ireland and will outline the actions required to achieve this. In order to ensure that the voices of patients and their loved ones are considered, the Patient Forum will feed directly into the Steering Group.
The Patient Forum is co-chaired by the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) and Rare Diseases Ireland (RDI), and supported by the office of the Chief Medical Officer in the Department of Health.
Minister Donnelly said:
"I am very aware that living with a rare disease can be an extremely difficult and isolating experience, affecting thousands of people all over Ireland.
"I’m committed to ensuring that our health service can provide the right care in the right place at the right time for all patients. That is why we must listen carefully to the views of those with lived experience of rare diseases, including loved ones, families, carers and advocacy groups.
"I want to thank the members of the Patient Forum for volunteering their time and I wish them well in their work. I would also like to remind people that expressions of interest for membership of the Patient Forum are still welcomed and I encourage anyone interested to get involved."
The Chief Medical Officer, Prof. Breda Smyth said:
"The Rare Disease Patient Forum is of paramount importance to ensuring that the input from those with lived experience of rare diseases is central to the development of a new National Rare Disease Strategy that is responsive to their needs and is fit for purpose for the future."
CEO of IPPOSI Dr Derick Mitchell said:
"Engaging patient groups and individuals living with rare diseases is essential in crafting and executing a comprehensive plan for rare diseases in Ireland. The Forum demonstrates the willingness of the government and the Department of Health to work collaboratively to ensure that no one is left behind as we move towards accessible, inclusive, and coordinated care for all."
CEO of Rare Diseases Ireland Vicky McGrath said:
"A series of PPI (patient & public involvement) and public engagement activities are planned in 2024 as part of the Patient Forum. These will include an in-person event at the Department of Health, Dublin in April, the details of which are being finalised. In addition, a regular series of online meetings, surveys and capacity building workshops will be announced in due course. We are using this first online meeting to outline the draft plan for how the Forum will operate, and impact on the work to both develop and implement the new National Rare Disease Strategy."
Notes
A rare disease is defined in Europe as a disease having a prevalence of fewer than 5 cases for every 10,000 persons. There are currently up to 8,000 described rare diseases. Collectively, these diseases affect around 6% of the population (accounting for an estimated 300,000 individuals in Ireland). The new Plan will seek to:
- address gaps in Rare Disease services and ensure that patients and their families receive the right care, at the right time, in the right place
- consider how best to integrate European Reference Networks into the national health service
- identify the core practical requirements of a Rare Disease Registry
- consider how to best promote rare disease awareness among healthcare professionals and the public
- consider how to best promote participation in national and international research
In December 2023, members of the public were invited to express their interest in participating in future patient and public involvement (PPI) and public engagement activities planned as part of the Rare Disease Patient Forum. Over 80 expressions of interest were received as part of this invitation. Two representatives of 'the lived experience' were appointed to the Steering Group at the end of January 2024. They are:
- Alan Finglas, father of Dylan; Research Manager & Founder of MSD Action Foundation
- Gillian Stafford, Person Living with a Rare Disease
The invitation to join the Rare Disease Patient Forum remains open to people with an interest in getting involved with its work. The Expression of Interest form is available.
If completing the form offline, please email completed forms to Rare_Disease_Patient_Forum@health.gov.ie or post completed forms to: Rare Diseases and Long COVID Policy Unit, Department of Health, 50-58 Lower Baggot Street, Dublin 2, D02 XW14.
If you require assistance with the form, please email Rare_Disease_Patient_Forum@health.gov.ie and a member of the team will be in touch to help.