{"id":5442,"date":"2019-06-13T07:24:06","date_gmt":"2019-06-13T07:24:06","guid":{"rendered":"https:\/\/gaviaspreview.com\/wp\/krowd\/?page_id=5442"},"modified":"2024-08-13T04:51:21","modified_gmt":"2024-08-13T04:51:21","slug":"manifiesto","status":"publish","type":"page","link":"https:\/\/fedimlat.org\/en\/manifiesto\/","title":{"rendered":"Manifesto"},"content":{"rendered":"
\n\t\t\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n
\r\n \r\n \r\n
MANIFESTO<\/span><\/div><\/div>\r\n \r\n \r\n

\r\n Our 7 Pillars<\/span>\r\n <\/h2>\r\n

\"Muscular Dystrophy (MD) is a rare disease that can affect anyone. From the Latin American Federation for Muscular Dystrophy we contribute to improve the quality of life and life expectancy of all those affected and their families\".<\/i><\/b><\/span><\/p>

\u00a0<\/p>

The Latin American Federation for Muscular Dystrophy is an organization formed by patient organizations from countries in the region.\u00a0<\/i><\/b><\/span><\/p>

\u00a0<\/p>

The Federation seeks to place DM on the agenda of the social and health systems of the countries of the Region,<\/span> promoting affirmative action measures that contribute to guaranteeing the health rights of the people concerned<\/span> with DM <\/span>of the Region, for the improvement of its <\/span>Quality of Life<\/i><\/b>.<\/span><\/span><\/p>

\u00a0<\/p>

It is within this framework of commitment <\/span>WE DECLARE<\/b> that:<\/span><\/span><\/p><\/div>\r\n \r\n \r\n <\/div>\r\n <\/div>\r\n

<\/div>\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n \r\n\r\n
\r\n
\r\n \r\n <\/i> <\/span>\r\n <\/div>\r\n \r\n

\r\n 1-) Regional Commitment \r\n <\/h3>\r\n
\r\n
We promote and encourage the inclusion of DM in the Agenda of the Socio-Health Systems of the countries of the Region, guaranteeing the quality and equity of care centered on people and their caregivers and family members, promoting a comprehensive and coordinated response to their needs, respecting their autonomy and values, and stimulating the involvement and responsibility of the community.<\/div>\r\n <\/div>\r\n <\/div> \r\n \r\n\r\n\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n \r\n\r\n
\r\n
\r\n \r\n <\/i> <\/span>\r\n <\/div>\r\n \r\n
\r\n 2-) Knowledge \r\n <\/h6>\r\n
\r\n
We are facilitators of the exchange between the Socio-Health Systems of the countries of the Region, favoring a better management of the knowledge available for the care and treatment of DM, promoting the adoption of the best practices existing at international level, favoring as a guide and reference their effectiveness and efficiency and equity in the access to care and treatment. \n<\/div>\r\n <\/div>\r\n <\/div> \r\n \r\n\r\n\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n \r\n\r\n
\r\n
\r\n \r\n <\/i> <\/span>\r\n <\/div>\r\n \r\n

\r\n 3-) Early Diagnosis \r\n <\/h3>\r\n
\r\n
We encourage Epidemiological Studies on DM in the Region, promoting the creation of a Latin American Registry of DM that will be at the service of patients and research on Muscular Dystrophy.\n<\/div>\r\n <\/div>\r\n <\/div> \r\n \r\n\r\n\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n \r\n\r\n
\r\n
\r\n \r\n <\/i> <\/span>\r\n <\/div>\r\n \r\n

\r\n 4-) Patient Groups \r\n <\/h3>\r\n
\r\n
We promote the creation and strengthening of patient organizations in the countries of the region as a basic tool for the representation of people with DM and the defense of their rights.\n<\/div>\r\n <\/div>\r\n <\/div> \r\n \r\n\r\n\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n \r\n\r\n
\r\n
\r\n \r\n <\/i> <\/span>\r\n <\/div>\r\n \r\n

\r\n 5-) Support and Sustainability \r\n <\/h3>\r\n
\r\n
We support and promote training, information and research in DM, favoring the viability and sustainability of research entities and institutions, establishing incentive systems that encourage the economic collaboration of the private sector and civil society.\n\n<\/div>\r\n <\/div>\r\n <\/div> \r\n \r\n\r\n\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n \r\n\r\n
\r\n
\r\n \r\n <\/i> <\/span>\r\n <\/div>\r\n \r\n

\r\n 6-) Full Inclusion \r\n <\/h3>\r\n
\r\n
We promote the Educational Inclusion of people with MD so that they can exercise their right to education in a full manner and adjusted to their specific needs, as well as we promote the Labor Inclusion of people with MD and their families, so that they can reconcile their work and family life. \n<\/div>\r\n <\/div>\r\n <\/div> \r\n \r\n\r\n\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t
\r\n \r\n\r\n
\r\n
\r\n \r\n <\/i> <\/span>\r\n <\/div>\r\n \r\n

\r\n 7-) Education and Employment \r\n <\/h3>\r\n
\r\n
The achievement of these objectives requires the participation and commitment of the organizations of all the countries of the Region, in order to guarantee the greatest legitimacy and strength in our actions, under the premises of ethics, the right to privacy and transparency, as basic values. The participation and involvement of people affected with DM is an unavoidable prerequisite in the framework of the legitimacy and representativeness sought.<\/div>\r\n <\/div>\r\n <\/div> \r\n \r\n\r\n\r\n<\/div>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t\t
\n\t\t\t
\n\t\t\t\t\t\t
\n\t\t\t\t
\n\t\t\t