When I presented the article that takes the name of this work, I had rescued part of my research done during the master's degree in Sociology. The research was based on in-depth interviews with relatives of people diagnosed with Neurofibromatosis, a genetic condition understood as a rare disease. Persons, also, were participants in some Civil Association. Having myself worked as a Director of a Civil Association, in Brasília - capital of Brazil, I used autoethnographic approach to compose my empirical and theoretical work.
According to the article, the people with a rare disease have find problems of delay and failure to diagnose, lack of information about the disease, lack of references to qualified professionals, lack of availability of quality care, lack of social benefits, poor coordination outpatient care, reduced autonomy and difficulty in integration into the world of work and the social and family environment. The absence of information, in large part, promoted by the State makes family responsible for creating the conditions to care, information search and often for a conclusive diagnosis.
The absence of the State in face of patient care, people living with the rare diseases reality always are looking for any support. The person who lives with the symptoms of a rare disease that invariably goes through the discrimination that civil society confers on those who do not fit into the normality model. The Person still suffers from to be the research targets, whose results, for the most part, are far from his understanding and knowledge.
Parents, mothers and family members are abandoned to their fate, living in the continuous search for information and seeking answers to diagnosed person needs. They are debating everyday with the unattainable - the cure of disease. In their efforts, they meet with other agents who, for the most part, are unaware of their needs and have specific agendas, which are far from having the person as the center of concern. The civil society associations are a fundamental point of support for patients and their families, but this research also revealed the weaknesses they present.
The support that civil associations can provide to those seeking help is indisputable. From the information they provide about illness and symptoms, to the appointment of health professionals for the right care, people who work in some association are premised on the commitment to welcome individuals who are in a situation similar to what they have experienced in the past. With scarce resources, volunteer work and the need to carry out community activities to get financial support, the majority of associations are far from what has been designated as Patient Organizations.
People who take on the role of participating in civil associations, beyond to the care they provide in the private sphere, they assume the responsibility to care for others. Their actions are constantly observed and in an intense vigil by the field's agents, especially, the pharma industries. In this way, they end up assuming state responsibilities that, invariably, come down to the medication. Although the civil associations are capable of assuming State´s functions and are accepted by a large part of the population, it can not be a norm or, worst, to have their activities supported by the State. And the reason is simple. Doing so, the Market´s health coordination is masked, and rights of citizenship are forgotten.
The welfare society can not therefore be understood as a field of social protection, since the guarantees that it can construct are to face the risk and not in the field of risk nullification or guarantee of certainty. Thus, providence society is not an alternative to the political model of the welfare state, although in societies with fragile social protection, such as Brazil and Portugal, it is consensually a component of the political model of the Social State.(Rodrigues, 1995)
The market reveals an enormous capacity to coordinate all agents on the rare disease field. Intervenes in the different activities of care production, through the diagnosis of the disease, the work of parents, mothers and patients, through the formation of civil society associations that will act in the awareness of the State and the search for patients. The ultimate goal is always the marketing of the medications they produce.
From the relationships among the agents of the field, it is possible to recognize a model for the profit's generation. This model assume that the different agents act following the capitalist rationalism to explore humans and frame the care into the medicines production. This model, which we call the Utility Model of Care (UMC), has been used since the last century successfully, revealing that the need for care has been supplanted by market values. Considering the influence of Pharma Companies and Civil Associations it is possible to identify three main lines where Civil Association can act.
In order to promote quality care for those with a rare disease diagnosis, the State must be developed activities to be the first sign of care to the people and to take the pharma's action under its control. To make this possible, it is necessary to know about the population's reality and its needs. Certainlly, the answer will be far from the production of medicines, and near of the necessity to care people in all its complexity, respecting the form and progression of the conditio's symptoms; approaching to the associations to make them an integral part of the development of policies, and, also, promoters of knowledge for others associations; to create mechanisms to support the identification of regional rare diseases associations with no medice available and, because of that, these people's reality are even more silenced than the associations that deal directly with the sale of medicines.
Overcoming the UMC will only be possible when the care takes the diagnosed person perspective and be transformed into a person-centered care. Its the State's responsibility to make the proposal real. To do that means to understand care in a multidisciplinary way. After all, to know the patients and their therapeutic itinerary, would not be a privileged information to improve the quality of any National Health System? Knowing diagnosed people and Civil Association's demands will be important to State find the care to beyond the idea grounded in the Orphan Drug Act necessity.
 The proposal made in the work was an alternative answer to the Hybrid Collective Model (HMC). According to HMC the agents are acting independently on the field and the Rare Disease Civil Associations' activities are linked with the SIDA’s movements. However, not only the Market has a huge influence on the field but also the Rare Disease Association’s has a history before the decade of 1950, in the USA.