K018 Ten years accomplishments in HD research, care and awareness: the LIRH foundation experience between 2014 and 2024
Year: 2024
Type: conference-abstract
Abstract: Background LIRH Foundation is a third-sector organization, founded in 2014. The three pillars of its HD focused activities are: care, research, advocacy. Aims To ensure that people affected by HD have less fear of it. To provide families with proper care, to foster clinical research and stimulate participation in clinical trials, to raise awareness, to advocate for patients’ needs, to contrast the mis-knowledge and the miscommunication, to turn up a light on juvenile and pediatric-onset HD, to bring younger people closer to the clinic. Methods Over the last 10 years, we have been developing an ‘organizational model’ based on proximity to the affected families, dedicated secretariat, integrated communication, knowledge of the HD affected individuals medical and social needs, networking with other advocacy organizations, education of health care professionals. Results Five local HD family associations became members of LIRH Foundation. HD prevalence in Italy and in the Middle East, HD disease burden for Italian families and the pediatric HD variant, were described. The number of first visits request has been growing each year. A different narrative of HD was spread (more than ‘chorea’). A specific procedure on genetic counselling was developed. A rare neurological diseases clinic was launched. The number of participants in clinical trials is doubled. Conclusions After 10 years of commitment, we can conclude that the HD community is better assisted, regularly involved in clinical studies, more aware of the neurodegenerative impact of the disease on their lives.
Language: English
Subfield: Cellular and Molecular Neuroscience
Field: Neuroscience
Domain: Life Sciences
Open Access status: gold
OpenAlex ID: W4402373673