H028 Huntington academy: real-life experiences for better care

<h3>Background</h3> There are multiple gaps in the provision of care to families impacted by Huntington’s Disease (HD). These gaps have been reported by family members providing care at home (informal caregivers) and by healthcare professionals working with HD families (formal caregivers). <h3>Aims</h3> The European Huntington Association, the Ligue Huntington Francophone Belge (Belgium), the Bulgarian Huntington Association (Bulgaria), and the Asociación Corea de Huntington Española (Spain) aim to create an innovative e-learning platform to provide high quality education and training to formal and informal caregivers of people impacted by HD – the Huntington Academy figure 1. <h3>Methods</h3> The Huntington Academy educational modules are being jointly created by patient organizations, family members and professionals from the countries involved in the project. Three national advisory groups were established, composed by knowledgeable family members and professionals. Online group meetings were held to present the project and get the group feedback. Semi-structured interviews were conducted with the members to collect their real-life experiences of caring for someone with HD. <h3>Results</h3> 12 family members and 19 professionals participated in the Huntington Academy content creation process. The first-hand knowledge and practical examples provided by these HD experts are being compiled, reviewed, and summarized by the project team. The summaries will be validated by the contributors and will be fed into the e-learning modules. <h3>Conclusions</h3> The Huntington Academy will be a free, multilingual educational platform, reflecting a bottom-up approach to care provision. This resource is expected to improve the standard of care for HD and support families living in underserved regions.