RARE DISEASE FAMILY STUDY: Social and Economic Impact Survey 24 April, 2025 </div> <p>This study, being carried out by PhD student <span>Niamh Buckle from the School of Nursing, Midwifery and Health Systems at University College Dublin in collaboration with QUB, aims to understand the financial and social situations of families with a child or children with a rare disease across the island of Ireland.</span></p> <p><span>Children with rare diseases have a lot of challenges, including a long wait for diagnosis, a lack of treatments, a lack of information on the disease, and a lack of consideration in health systems and health and social care policies. Understanding these impacts can help influence services to improve these challenges. </span></p> <p><strong>Who can take part:</strong></p> <p><span>Parents or guardians over 18 years of age with children who have rare diseases or are undiagnosed (suspected rare condition/s).</span></p> <p><span>Those living in the Republic of Ireland or Northern Ireland.</span></p> <p><strong>What is involved:</strong></p> <p><span>You will be asked to complete an online survey with questions on your household finances, caregiver burden, social life and happiness. The survey takes around 30 minutes to complete:</span></p> <p><span><a href="https://healthandagriscience.fra1.qualtrics.com/jfe/form/SV_7R7RTr9J79sxBB4">All-Ireland Survey of Families of Children with Rare Diseases</a></span></p> <p> </p> <section class="callout bg-white margin-0"> <div class="grid-x grid-margin-x"> <div class="medium-auto align-self-middle cell"> </div> </div> </section> <address class='callout margin-bottom-3 large-margin-bottom-0'><h6 class='text-uppercase'>Media</h6><p>Niamh Buckle</p> <p>niamh.buckle@ucdconnect.ie</p></address> </div> <!-- SHARE --> <div class="xxlarge-3 xlarge-4 cell small-order-3 xlarge-order-1 margin-bottom-3"> <h6 class="text-uppercase">Share</h6> <ul class="share-list text-white"> <li><a href="javascript:window.open('http://www.facebook.com/sharer/sharer.php?u=https://www.qub.ac.uk/sites/RareDisease/News/08052025NiamhBucklesurvey.html&t=RARE+DISEASE+FAMILY+STUDY%3A+Social+and+Economic+Impact+Survey', 'facebook_share', 'height=320, width=640, toolbar=no, menubar=no, scrollbars=no, resizable=no, location=no, directories=no, status=no');void(0);" class="fb" aria-label="Share on Facebook"><span class="fab fa-facebook-f"></span></a></li> <li><a href="javascript:window.open('https://twitter.com/intent/tweet?text=RARE+DISEASE+FAMILY+STUDY%3A+Social+and+Economic+Impact+Survey&url=https://www.qub.ac.uk/sites/RareDisease/News/08052025NiamhBucklesurvey.html', 'twitter_share', 'height=320, width=640, toolbar=no, menubar=no, scrollbars=no, resizable=no, location=no, directories=no, status=no');void(0);" class="tw" aria-label="Share on Twitter"><span class="fab fa-x-twitter"></span></a></li> <li><a href="javascript:window.open('https://www.linkedin.com/shareArticle?mini=true&url=https://www.qub.ac.uk/sites/RareDisease/News/08052025NiamhBucklesurvey.html','linkedin_share', 'height=320, width=640, toolbar=no, menubar=no, scrollbars=no, resizable=no, location=no, directories=no, status=no');void(0);" class="li" aria-label="Share on Linkedin"><span class="fab fa-linkedin-in"></span></a></li> <li><a href="mailto:?subject=RARE DISEASE FAMILY STUDY: Social and Economic Impact Survey - 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