PROJECTS

The project’s goal is to articulate collective interests among rare disease patients. To propose that the topic be discussed by all health segments and that these experiences be systematized, building reference for public education and health policy. To find experiences in Public Health Policy in other countries, states and municipalities, and to expand training and the level of participation of various groups that work in health. To directly reach people who act in social and popular movements or in advisory and training activities, health professionals, technicians and administrators, who are committed to the prospect of public education Creators Choice.

Based on the report “On the front lines: rare and ultra-rare diseases do also exist in Brazil", CASA HUNTER will intensify its coordination to unite the programs of associations that act in defense and/or assistance of patients with rare diseases and their families. The project will consist of permanent research work, documentation and monitoring of cases, as well as possible violations of the patients’ rights. 18 This will be done primarily through the quarterly publication of the report "At the Front Line: Rare and very rare diseases also exist in Brazil" and also by referring the most emblematic cases to the measures of competent authorities and, when necessary, to international organizations for the protection of their rights. In this regard, the publication of the report “On the front lines: rare and ultra-rare diseases do also exist in Brazil" aims to showcase rare and ultra-rare diseases and bring the attention of public authorities, health professionals and the general public to the existence of these diseases, the neglect they suffer and complete lack of awareness towards them. This way, we can provide subsidies and propose public policy to ensure that patients with rare diseases and their families are adequately and effectively treated.

The Project for Continuing Education in Health will be designed to contribute to the efficiency of the disease management in Hospitals, clinics, outpatient clinics and doctor's offices, and is aimed at appreciating workers and improving the services provided to the population. However, the main objective is to provide training on new practices and developing skills, as well as technical-scientific refresher and the revision of routines, procedures and technology use. We understand that building a continuing education project should be a collective enterprise, with the participation of managers and professionals representing almost all services in the health area, as well as students and patient associations. It is also necessary to consider professional’s prior experiences. It should be emphasized that the guidelines and methodological guidelines of this project will be consistent with the National Health Policy, since they recommend developing educational actions based on problematizing the work process, referring to the needs and demands for services and the population we serve. 23 The Project will develop assessment action for their treatment, among which research and monitoring action for the activities of the Continuing Education Groups and disease awareness.

In line with the National Social Assistance Policy - PNAS and all other normative diplomas governing social assistance in Brazil. The notion of citizenship emerging in Brazil, in relation to social movement experiences in the late 1980s, brought about the notion of rights, whose starting point is the concept of “the right to have rights" and concerns not only legal achievements, but also the "creative invention of new rights." It is also a notion of citizenship, which comes from 'bottom up', as a strategy for non-citizens. This allows the diffusion of a “rights culture", in which citizenship is constituted as "a proposal of sociability". In this perspective, the relationship to the State presumed by this type citizenship, is not based on a relationship between the former and the individual, as in liberal logic, but increasingly includes civil society. This new citizenship implies: the “demand for the right to participate effectively in the definition of the political system". It is in the field of citizenry that claims the "right to have rights” that the importance of social assistance as a matter of public policy in Brazil is acknowledged. In a country that builds its social protection system, where citizenship has always been a privilege for those included in the market, the defense of social assistance policy from a perspective of social justice, redistribution and citizenship takes on a strategic dimension and builds new possibilities for conquering universal social policy, their recognition as detainers of rights and the construction of their hegemony. Helping families who are in a situation of social vulnerability, through financial support to acquire equipment to give to patients when they need it; offering psychological assistance to the relatives of rare and very rare disease patients who do not have financial conditions; providing dental care to family members of rare and ultra-rare disease patients who do not have financial conditions; providing the means for rare disease patients to be consulted by a medical specialist if they do not have financial conditions; providing means for patients to have access to the necessary diagnosis and treatment;