The proposal

Academia de Patients 2030 © is a non-formal Continuing Education project in Public Health focused on rare diseases, which seeks to explore the interfaces between bioethics and human rights, in the light of the Sustainable Development Goals of the 2030 Agenda.

The idea comes from following up on the work of some stakeholders interested in “promoting rare diseases as a priority in global health, research, and medical and social care as part of the UN’s 2030 Agenda”.

Such social actors were interested in aligning themselves with the UN’s perspective given its role in promoting an agenda of “robust public health, social development, the inclusion of vulnerable populations, development in ST&I and human rights for all.”

They realized that people with rare diseases belonged to the same category of traditionally disadvantaged social groups, being “a marginalized population” like any other, but with the differential of “rarity.”

These social actors verified that rare diseases lent themselves to promoting a global health agenda, given that patients suffer from similar problems, especially regarding the social dimension of the issue: stigma, discrimination, prejudice, unemployment, and inequalities. Its consideration as a collective grouping with common social problems was also motivated by the fact that 98% of people affected by it have one of the 390 most common rare diseases. We must note that more conservative estimates account for 6,000 rare diseases.

As health professionals, this insight called our attention to the potential to change the vector of public debates beyond the well-worn discussion about access to high-cost medicines and their consequent adjudication (in Brazil’s context). In this sense, we understand that pharmaceutical services to these subpopulations is just one of several dimensions of service necessary for this globally neglected population.

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