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Prevenzione e salute

RareConnect promotes global conversation and collaboration to improve the lives of rare disease patients and assist the organizations that serve them. RareConnect is an online social network for patients and families who live with one of over 6,000 rare diseases to connect with one and other to support and share vital experiences on aspects of living with a rare disease. Organized into disease specific communities, the platform also provides links to quality information, clinical trials and research publications and provides an opportunity for international networking and collaboration between patient organizations.

LIRH è un’associazione senza scopo di lucro composta da familiari, ricercatori e medici interessati ad incoraggiare la ricerca clinica, a migliorare l’assistenza medica, psicologica e sociale per i pazienti e le loro famiglie, a divulgare informazioni sui progressi scientifici e sulle nuove cure possibili per la malattia di Huntington e per le patologie a questa correlate.