First meeting of Patient Forum to assist in the development of National Rare Disease Strategy
9 February 2024 – The Rare Disease Patient Forum is being established to ensure the voices and lived experience of people living with rare diseases and their families remain central to the development of this strategy. The Patient Forum will be chaired by Vicky McGrath, CEO Rare Diseases Ireland and Dr Derick Mitchell, CEO IPPOSI. The input collected through the Patient Forum will feed directly into the work of the Steering Group in developing the new Strategy.
The first meeting of the Patient Forum is scheduled to take place virtually on Wednesday, 14th February at 13:00.
If you have not already completed and Expression of Interest and would like to join this meeting or hear about future meetings and events or other opportunities to contribute to this important work, please complete the Expression of Interest.
The Steering Group and the Department of Health hope that many people will take part in the Patient Forum and engage with the work of Steering Group and the development of the National Rare Disease Strategy for Ireland.
Complete the Expression of Interest
&
Join the Rare Disease Patient Forum
If you have NOT previously completed an Expression of Interest to join the Patient Forum, you can still do so. To get involved:
- Complete the Expression of Interest (EOI) form online by clicking here; OR
- Download the EOI form and complete offline.
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 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.
Bringing the lived experience voice to the National Rare Diseases Steering Group
8 February, 2024 Expressions of interest (EOI) were sought from people living with rare diseases, their family members and the wider rare disease community to contribute to and support development of the new National Rare Disease Strategy and Implementation Plan for Ireland.
Over 80 Expressions of Interest were received by the January 8 deadline. From the applications received, two candidates were nominated and endorsed by the Steering Group to join the Steering Group. They were appointed to the Steering Group on 31st 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 Steering Group Members wish to commend the quality of submissions and wealth of experience and insights shared as part of the application process.
Expressions of interest: Rare Disease Patient Forum to assist in the development of the new Rare Disease Strategy
21 December, 2023 Expressions of interest (EOI) are being sought from people living with rare diseases, their family members and the wider rare disease community to contribute to and support development of the new National Rare Disease Strategy for Ireland.
You may complete the EOI online or download the form to complete off-line and email to rare_diseases_long_covid@health.gov.ie or submit by post to: Rare Diseases and Long COVID Policy Unit, Department of Health, 50-58 Lower Baggot Steet , Dublin 2. , D02 XW14
Expressions of interest will be accepted until 5pm on Monday, 8 January 2024. There will also be further opportunities to contribute and get involved subsequent to this date however we expect to populate the Steering Group and RD Patient Forum from submissions received by this date.
If you require assistance to complete the Expression of Interest please contact please contact rare_diseases_long_covid@health.gov.ie by 3 January 2024 to ask for assistance.
The Expression of Interest application form is supported by the Department of Health. The Minister and the Chief Medical Officer have issued a statement supporting this initiative.
Rare Disease Patient Representatives Welcome the Development of a New Rare Disease Strategy for Ireland
7 December, 2023 – The Irish Platform for Patient Organisations, Science and Industry (IPPOSI) and Rare Diseases Ireland (RDI) welcome the announcement from the Minister for Health Stephen Donnelly on the establishment of the National Rare Disease Steering Group, tasked with developing a new Rare Disease Strategy for Ireland.
Around one in 17 people live with a rare disease, so while diseases are individually rare, they cumulatively affect a substantial proportion of the Irish population, estimated at 300,000 people. The impacts on people living with rare diseases and their families are wide-ranging. Rare diseases are chronic, progressive, degenerative and often life-threatening. They carry with them significant levels of morbidity and disability, including cognitive, developmental, intellectual, mental, physical and sensory challenges, and are a significant contributor to infant and child mortality and reduced life expectancy.
IPPOSI CEO Dr. Derick Mitchell and RDI CEO Vicky McGrath have agreed to co-chair a Rare Disease Patient Forum, supported by the office of the Chief Medical Officer in the Department of Health. With a patient-centred approach, this forum will aim to gather and collate input from the rare disease community, particularly focusing on ‘the lived experience’ of patients and families to inform the development of the plan.
Welcoming the initiative, Derick Mitchell said “The delivery of this new strategy, despite the challenges of the current environment, shows the commitment of the government to make meaningful progress. Engaging delivery partners and patient groups is essential in crafting and executing a comprehensive strategy for rare diseases in Ireland. As we approach Universal Health Coverage Day on 12 December, it is imperative that we recognise that true universality in health and social care extends to the 300,000 people living with a rare disease in Ireland. In developing this new plan, we want to work collaboratively to ensure that no one is left behind as we move towards accessible, inclusive, and coordinated care for all.”
Speaking ahead of the inaugural meeting on 7 December, Vicky McGrath said “People living with rare diseases experience delays with diagnosis, limited and disjointed access to specialist expertise and treatments and inadequate care in the community. We welcome the focus on addressing gaps in healthcare services and integration of care, including that provided by the expert European Reference Networks, across the Irish healthcare system for people affected by rare diseases. We will work to ensure that this strategy delivers for all people living with rare diseases, by ensuring earlier, faster and more accurate diagnosis, integrated national and European care pathways and improved person-centred and lifelong holistic treatment and care.
About IPPOSI
The Irish Platform for Patients’ Organisations, Science and Industry (IPPOSI) is a unique, patient-led partnership in Ireland and internationally. The platform brings together patient groups, scientists, clinicians, industry professionals, and other key decision-makers to build consensus on issues relevant to all involved in delivering treatments and innovations to people with unmet medical needs.
The IPPOSI vision is that the patient voice is at the centre of all health policy, care, research and innovation in Ireland. To that end IPPOSI develops and implements initiatives such as workshops, education programmes, citizen juries and conferences on policy, legislation, regulation related to health innovation in Ireland. More about our work can be found at www.ipposi.ie.
About RDI
Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland, working across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.
Our vision is a country where all people living with rare diseases live longer and better lives, reaching their full potential, and are included in a society that leaves no one behind. We want equity for people living with rare diseases in Ireland – equitable access to diagnosis, treatment, health and social care and opportunity.