H10 Lirh foundation as a network of HD family organizations. (12th September 2022)

• Record Type: Journal Article
• Authors: Migliore, Alessia; Scandale, Giuseppe; Micchetti, Nicola; Zurru, Alessia; D'Alessio, Barbara
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 93(2022)Supplement 1
• Page Start: A66
• Page End: A67
• Publication Date: 2022-09-12
• Subjects: Network -- care -- research -- advocacy -- engagement; Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2022-ehdn.174
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: LIRH – Italian Huntington's Research League Foundation – is a not-for-profit organization founded by patients, researchers, and clinicians sharing the goal of improving HD families' lives, both trough research and care. The word RESEARCH is in our name to underline our engagement in clinical research. The word LEAGUE refers to the idea of a network: this is the aspect that the present abstract intends to focus on. According to our legal nature, our members can be individuals as well as organizations. Aims: To create a network of HD family organizations sharing the same values, mission, and research vision as LIRH's to be more effective in increasing patients' recruitment in clinical trials, supporting research, providing good clinical care, advocating for patient's needs. Methods: We use communication tools as the website, newsletters, social media, events, outpatient clinics. Results: Four HD Associations in different areas of the Country were born in the last five years and became LIRH Foundation legal members: LIRH Toscana, LIRH Puglia, LIRH Sardegna and NOI Huntington, The Italian HD youth organization. Until now, the LIRH network has allowed the recruitment of >1050 participants into ENROLL-HD and of 25 patients into the PROOF-HD trial. Conclusions: The LIRH Network strengthens HD awareness and information sharing on available treatments and innovative therapies; encourages individuals to participate in clinical trials; facilitates networking and experiences sharing among families; makes HD voices heard; helps families advocate for equal access to care, no matter where they live.