A detailed analysis of the current healthcare and social support services available to people with EB
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It is our mission to improve the lives of those affected by EB and make sure the gap between what the EB community needs and what they receive gets smaller and smaller. Through our advocacy, support services, and research initiatives, we aim to make a real difference for people living with EB in Ireland.
The EB Butterfly Review is a ground-breaking research project designed to identify the strengths, gaps, and challenges in the care and support available to people with EB in Ireland. This study will gather crucial evidence to help Debra advocate for better services and support, ensuring that everyone with EB can access the care they need at every stage of life. Debra have partnered with Ernst & Young (EY) who will carry out the research and create a report outlining the research results.
This research will help Debra to:
To gather the most accurate and relevant data, the EB Butterfly Review will use a mix of quantitative and qualitative research methods. This includes:
A detailed analysis of the current healthcare and social support services available to people with EB
A review of best practices in EB care, both in Ireland and globally
Clear, actionable recommendations for improving services, along with an assessment of the costs involved
An executive summary that distills the key findings and recommendations
The EB Butterfly Review is expected to be completed by early 2025, following a six-month research period. We will keep you updated throughout the process and share the results as soon as they are available.
Your participation in the EB Butterfly Review is not just valuable—it’s essential. Together, we can create a future where no one impacted by EB has to face their challenges alone. Thank you for helping us transform the lives of those affected by EB.
Your voice is vital to the success of the EB Butterfly Review.
Hearing the voices of those impacted by EB is crucial to ensuring that this research truly reflects the real needs and challenges faced by the EB community in Ireland. Your insights and experiences provide invaluable perspectives that go beyond data and statistics, capturing the day-to-day realities of EB. By including voices like yours, we can ensure that our findings are not only accurate but also deeply informed by the experiences of those who understand EB best. This approach will help us advocate more effectively for the services and support that genuinely make a difference in the lives of people with EB.
By participating, you are contributing to a comprehensive understanding of the current landscape of healthcare and social support for people with EB. This includes everything from hospital care to community-based services and social supports. The insights we gather will shape our recommendations for improving access to these essential services, and allow us to advocate for them more effectively in the future.
We understand that participating in research involves sharing personal experiences and sensitive information. Please rest assured that all the information you provide will be treated with the utmost care and confidentiality. Data will be securely stored and only used for the purposes of this research.
Your privacy is our priority, and your contributions will be anonymised in any published reports.
Ernst & Young (EY) are carrying out this research with Debra, in order to ensure the results are non-biased. This survey has been developed by EY with the help of Debra’s Family Support, Advocacy and Research teams.
With your help, we can make a real difference in the lives of people living with EB across Ireland. Your involvement will help ensure that the voices of the EB community are heard and that the right changes are made.
With your help, we can make a real difference in the lives of people with EB across Ireland. Your involvement will help ensure that the voices of the EB community are heard throughout the research and beyond.
