Consultation
Public Consultation for the development of the new National Rare Disease Strategy
From Department of Health
Published on
Open for submissions from
Submissions closed
Last updated on
Consultation is closed
A ‘rare disease’ is as a life-threatening or chronically debilitating disease affecting at most 5 people out of every 10,000. However, there are more than 6,000 known rare diseases affecting up to 6 per cent (6 out of every 100) of the total EU population (at least 30 million Europeans).
At any time, about 300,000 people in Ireland are living with a rare disease.
Rare diseases present unique challenges for patients, their families, and the wider healthcare community. This is why we need to take a national, strategic approach to rare diseases.
The first National Rare Disease Plan for Ireland 2014-2018 was published in 2014. That Plan contained 46 recommendations focused on:
- improving diagnosis
- identifying centres of excellence
- setting up dedicated rare disease treatment pathways.
You can get more information on the group leading work in this area, the National Rare Disease Steering Group here.
This public consultation is being conducted by the Department of Health, as part of the work of the National Rare Disease Steering Group for the development of the new National Rare Disease Strategy. We are interested in your views on what areas are the most important to people living with a rare disease and the diverse range of stakeholders involved in the provision of care, healthcare, medicines, research etc.
The views and opinions collected as part of this consultation will be considered and will be used to inform the development of the Strategy and the recommendations of the Rare Disease Steering Group contained therein. This Strategy will also be informed by a range of other inputs including the experiences of people living with a rare disease and expert knowledge and advice.
Please click on the ‘Complete Survey’ link below to take you to the survey. You will be redirected to the EU Survey site where you will be given further instructions on how to complete the survey.
If you would prefer to download the survey, please select the appropriate form from the options below:
Rare Disease Public Consultation Survey - for NGOs, AdvocacyGroups and Organisations
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Rare Disease Public Consultation Survery - Patients, Families and Carers
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If completing the form offline, please email completed form to rarediseaseconsultation@health.gov.ie
Or post completed forms to: Rare Diseases Unit, Department of Health, 50-58 Lower Baggot Street, Dublin D02 XW14
If you have issues with downloading the forms, or with using the EU Survey site, please email rarediseaseconsultation@health.gov.ie
The information from the public consultation will be analysed by the Department of Health.
Your views will contribute to the further development of the new National Rare Disease Strategy. We would like to find out which improvements would have the biggest impact on rare disease services in Ireland as they affect people.
We will use the results of this consultation to help the National Rare Disease Steering Group develop a new National Rare Disease Strategy for Ireland. This Strategy will also be informed by a range of other inputs including the experiences of people living with a rare disease and expert knowledge and advice.
The Department of Health is committed to protecting your privacy when we use the personal information collected in this survey. We will use the information you provide only to develop the National Rare Disease Strategy.
Under the GDPR (General Data Protection Regulation) we will use information we gather in this survey because this work is in the public interest.
We will treat all information you give us sensitively. We will limit access to your information to relevant staff working within the National Rare Disease Steering Group. We will hold all information until December 2024. After that, we will dispose of the information with permission of the National Archives.
You have rights in how your personal information is used. The Department has appointed an independent person within the Department to deal with any questions about how we are using your personal information. If you have any data protection questions, the Data Protection Officer (‘DPO’) can be contacted by email DPO@health.gov.ie .