The COVID‐19 pandemic has led to a reorganization of health systems to prioritize the fight against the virus. The adoption of social distancing interfered with the flow of existing policies, and may thus negatively affect the most vulnerable groups, such as the rare disease community. Aimming at characterizing the perception of the impact of COVID‐19 on the health care of the Brazilian rare disease community, an online questionnaire addressed to patients with rare diseases and their caregivers was disseminated in the Brazilian territory between June 1st to July 5th, 2020. The questions dealt with the sanitary measures adopted; access to medical services; and mental suffering during the pandemic. The survey was answered by 1,466 participants (<18 yo = 53.3%) representing 192 rare diseases. Regarding physical distancing, 1,372 (93.6%) participants did not leave their residence, or did so only when essential; 1,321 (90.1%) always wore masks when leaving home. 1,042 (71.1%) and 995 (67.9%) participants, respectively, referred medical genetics appointments and rehabilitation therapies were postponed/canceled. Telemedicine was experienced by 1,026 (70%), and 68.3% agreed this is a good strategy for health care. Patients with Inborn Errors of Metabolism (IEM, n = 624, 42.5%) appear to have more access to information and ability to overcome difficulties, and feel less threatened, lonely and depressed than the non‐IEM group ( p < .05). There was an increment of the rare disease patients' vulnerability in the pandemic scenario. The cooperation of patients/caregivers along with adaptation of the health system is crucial and may be so even post‐pandemic.

Neutrophils constitute the first line of host defense against pathogens. In the present study 2-D gel electrophoresis-mass spectrometry technology was employed to analyze the human resting neutrophils proteome. One hundred and two conserved spots were subjected to peptide mass fingerprinting, yielding 22 identifications. Among the identified proteins, nine are related to the inflammatory process, two polypeptides are assigned to metabolic functions and five are classified as structural.

Este artigo discute a instituição dos cuidados paliativos como uma forma de cuidado humanizado para pacientes pediátricos dependentes de ventilação mecânica invasiva sem perspectiva de cura. Para refletir sobre esta proposta, realizou-se incursão teórica em literatura, buscando-se estabelecer um diálogo entre a Declaração Universal sobre Bioética e Direitos Humanos e cuidados paliativos pediátricos. A instituição dos cuidados paliativos para esta população vulnerável pode ser fundamentada em argumentos de alguns princípios contidos na Declaração, principalmente aqueles que asseveram o respeito pela dignidade humana, pelos direitos humanos, pela vulnerabilidade e pela integridade. Os artigos da Declaração situam a Bioética dentro da realidade humana social e concreta, e, abrem novas perspectivas para a reflexão e a ação em cuidados paliativos.Palavras-chave: Bioética. Cuidados paliativos. Limitação do suporte de vida. Pediatria. Ventilação pulmonar.Unidade de terapia intensiva. ResumenCuidados paliativos pediátricos: una reflexión bioética.Este artículo analiza la institución de los cuidados paliativos como una forma de atención humanizada para los pacientes pediátricos dependientes de la ventilación mecánica invasiva sin perspectivas de cura. Para reflexionar sobre esta propuesta, se realizó una incursión teórica en la literatura, buscando establecer un diálogo entre la Declaración Universal sobre Bioética y Derechos Humanos y los cuidados paliativos pediátricos. La institución de cuidados paliativos para esta población vulnerable puede basarse en argumentos de algunos principios contenidos en la Declaración, especialmente aquellos que afirman el respeto a la dignidad humana, los derechos humanos, la vulnerabilidad y la integridad. Los artículos de la Declaración sitúan a la Bioética dentro de la realidad social y humana concreta, y abren nuevas perspectivas para la reflexión y la acción en cuidados paliativos.Palabras clave: Bioética. Cuidados paliativos. Limitación esfuerzo terapéutico. Pediatría. Ventilación pulmonar.Unidad de terapia intensiva.

RESUMO Ivan Illich foi um crítico radical da sociedade industrial, cujas ideias influenciaram a propagação de um movimento contra os cuidados da saúde pela medicina na década de 1970. Em sua obra, a medicina, é vista como empresa médica cuja função é ameaçar a saúde, através da colonização médica da vida, que aliena os meios de tratamento; e do monopólio profissional, que impede a partilha do conhecimento científico. O presente artigo tem como objetivo apresentar aspectos da vida e obra de Ivan Illich, com ênfase em seu livro 'A expropriação da saúde: nêmesis da medicina ' (1975), e também de sua segunda crítica social à saúde, com a introdução de novos conceitos em sua obra, em 1985. PALAVRAS-CHAVE

End-stage renal disease (ESRD) is an important public health problem, especially in developing countries due to the high level of economic resources needed to maintain patients in the different programs that make up renal replacement therapy (RRT). To analyze the differences and inequalities involved in access to RRT in the BRICS countries (Brazil, Russian Federation, India, China and South Africa). This is an applied, descriptive, cross-sectional, quantitative and qualitative study, with documentary analysis and a literature review. The sources of data were from national censuses and scientific publications regarding access to RRT in the BRICS countries. There is unequal access to RRT in all the BRICS countries, as well as the absence of information regarding dialysis and transplants (India), the absence of effective legislation to inhibit the trafficking of organs (India and South Africa) and the use of deceased prisoners as donors for renal transplants (China). The construction of mechanisms to promote the sharing of benefits and solidarity in the field of international cooperation in the area of renal health involves the recognition of bioethical issues related to access to RRT in the BRICS countries.