2016 / People / Children

Summer holiday camp for rare children

  • Photographer
    Rodrigo Cabrita
  • Agency / Studio

The House of Marcos (Casa dos Marcos) is the largest project of Raríssimas. Located in Moita, outskirts of Lisbon. Imagined by Marcos, a rare boy who once drew a little yellow house, the project of the House of Marcos was thought to detail to meet the specific needs of all others "Marcos" of our country. The House of Marcos, the first Resource Centre for Rare Diseases in Portugal, was thought to offer a necessary and hitherto non-existent response, despite the National Network of Reference Centres have been considered a priority in the National Programme for Rare Diseases in 2008 and the recognition of patients with rare disease as a vulnerable group. The House of Marcos has a care model pioneered in Portugal and Europe, integrating social and health functions in a single building, fully accessible to people with disabilities. In the social valences, Casa dos Marcos has an Occupational Activity Center, a Home Residential and an autonomous residence. The know-how accumulated over the last three years of daily activity, working exclusively with people with rare disease and health professional teams mainly dedicated to the diagnosis, intervention and monitoring of rare diseases, Raríssimas understand meet the conditions to act at a level of excellence, provided the necessary means guaranteed. This reportage is about a summer camp for two weeks performed specially for rare children.