Pope Francis: rare diseases, “no more indifference”. “Ensure access to care”

Information, formation and research are key in the fight against rare diseases as well as “an economic paradigm shift” to rediscover the “centrality of the human person” and ensure “access to care”. Pope Francis offered these guidelines in his address today to the participants in the International Conference on the Progress of Regenerative Medicine and its Cultural Impact, organised by the Pontifical Council for Culture. “All too often, these patients”, the Pope began, “are not given sufficient attention, because investing in them is not expected to produce substantial economic returns”. Yet “these diseases affect millions of people across the world and cause suffering and anxiety for all those who care for them, starting with their family members”. Pope Francis went on to focus on “three aspects of the commitment of the Pontifical Council for Culture and institutions working with it: the Vatican Science and Faith Foundation–STOQ, the Stem for Life Foundation, and many others who are cooperating in this cultural initiative”. The first goal is to increase “sensitivity” since “it is fundamentally important that we promote greater empathy in society, and not remain indifferent to our neighbour’s cry for help, including when he or she is suffering from a rare disease”. Then “research” is of the essence: “it is necessary in medical and life sciences to offer interdisciplinary courses which provide ample room for a human formation supported by ethical criteria. Research, whether in academia or industry, requires unwavering attention to moral issues if it is to be an instrument which safeguards human life and the dignity of the person. Formation and research, therefore, aspire to serve higher values, such as solidarity, generosity, magnanimity, sharing of knowledge, respect for human life, and fraternal and selfless love”. Finally, the Pope stressed the need to “ensure access to care”, highlighting that “the globalization of indifference must be countered by the globalization of empathy”. “We are called – he said – to make known throughout the world the issue of rare diseases, to invest in appropriate education, to increase funds for research, and to promote necessary legislation as well as an economic paradigm shift with a view to rediscovering the centrality of the human person”.

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