H025 Approach to comprehensive community care to the HD population in the state of Zulia, Venezuela

<h3></h3> Limited access to health services in developing areas deepens the negative impact that Huntington’s disease exerts at the individual, family, community, and transgenerational levels. Descendants of the Venezuelan families that made possible the discovery of the htt gene, in cooperation with The Huntington’s Disease Collaborative Research Group, more than 30 years ago(1), are still subject to disadvantaged situations which comprise not only limited access to optimal health care but also insufficient access to potable water, inadequate housing, scarce educational and employment opportunities, among others. To improve those aspects, Factor-H and the local non-governmental organization Habitat LUZ designed a comprehensive program encompassing Community Development, Youth, Health &amp; Disease Management, and Advocacy &amp; Data Collection thematic areas. Through collaboration with local organizations, professionals, and community members, we carry out activities to improve nutrition, increase adherence to school, provide support to caregivers, expand health professionals training on HD, deliver medical supplies, increase access to primary and specialized medical care, as well as promote HD awareness among governmental and non-governmental institutions. Currently, the program supports a total of 205 HD patients, 468 children at risk, and members of 174 families. Undertaking comprehensive approaches involving the participation of community members and local institutions, we aim to attain longer-lasting improvements in individual- and population-level health and socio-economic indicators. <h3>References</h3> Macdonald ME, Ambrose CM, Duyao MP, Myers RH, Lin C, <i>et al</i>. A Novel Gene Containing a Trinucleotide That Is Expanded and Unstable on Huntington’s Disease Chromosomes. Cell. 1993;72:971–83.