A survey series examining life with a rare condition in Ireland

What is the Rare Reality series of surveys?
This series of surveys is designed by Rare Diseases Ireland (RDI) to gather and track different aspects of the experiences of people living with rare and undiagnosed conditions and their families and carers. The findings will be used to inform our work at RDI. The results of these surveys will help us to raise awareness of the issues and challenges facing those affected by rare and undiagnosed conditions.
The first survey will examine the healthcare experiences of people living with rare conditions. Subsequent surveys will look at the psychological and social impacts of living with a rare condition and the economic burden of living with a rare condition.
In this survey series, ‘a person living with a rare condition’ refers to a person with
– A confirmed rare disease diagnosis, OR
– A suspected rare disease diagnosis (undiagnosed condition) OR
– A syndrome without a name (SWAN) diagnosis.

Who can take part?
You can take part if you are aged 18 or over and you live in Ireland. You can be:
1. a person living with a rare or undiagnosed condition;
2. a family member or carer of a person living with a rare or undiagnosed condition.
If you are under 18 years of age, a family member or carer can complete the survey for you.

Who is funding the survey?
The survey work (including design, analysis and report writing) is being undertaken by RDI. Financial support for this work is provided by a number of industry sponsors who have an interest in rare conditions. No one from industry has any role or influence in design, analysis or reporting of this research. If you would like further information on who is supporting this research please see individual survey details.

Who will know I have taken part?
Your responses will be submitted to RDI. RDI will not tell anyone that you have taken part in this survey. You will not be asked for any identifying information. All data is collected and stored in line with RDI’s privacy policy. 

How will survey responses be reported?
Aggregate data will be summarised and published in a report that will be shared with policy makers, healthcare providers and the public. Reports will be published on RDI’s website. By taking any survey you must consent to the use of your data for this purpose. 

Can we use your words?
We would like to use some quotes from respondents in reports, publications and/or meetings/conferences. We will not use any names or identifying features. You will be able to decide whether you consent to your quotes being used in this way. Declining to have your quotes used does not prevent you from taking part in a survey.

If you have any questions or would like assistance to complete any survey, please contact us at advocacy@rdi.ie.

Rare Reality I

This survey examines diagnosis and management of rare conditions from the perspective of people living with rare conditions and their families and carers.  There are questions about:

  • Symptoms & diagnosis
  • Accessing genetic services
  • Information & awareness
  • Patient voice
  • Coordination of care
  • Access to specialist care and treatment
  • Research
  • Use of technology
  • Impact of Covid-19
  • Overall care experience