Pope Calls for Inclusion in Meeting with Italian Rare Disease Group
February 13, 2023
Rare Daily Staff
Pope Francis spoke about the potential rare disease organizations can play at a social and political level to improve the common good by improving healthcare for all, during an audience with a delegation from the Italian Federation for Rare Diseases.
“Indeed, good politics depends also on the contribution of associations, which, in specific matters, have the necessary knowledge and attention towards people who risk being neglected,” Pope Francis said. “Here is the decisive point: it is not a matter of claiming favors for one’s own category, this is not good politics; but rather it is a question of fighting so that no one is excluded from the health service, no one is discriminated against, no one is penalized.”
As an example, he pointed to the ability of groups like the Italian Federation for Rare Diseases to apply pressure to overcome national and commercial barriers to the sharing of results of scientific research to accelerate progress.
“Certainly, it is difficult to commit on behalf of everyone when you are already struggling to face your own problem,” the Pope said. “But precisely here lies the strength of the association, and even more so the federation: the capacity to give a voice to the many who, alone, would not be able to make themselves heard, and thus represent a need.”
He spoke about the importance of listening to patient representatives from the start of the decision-making process and noted that they not only “ask” but also “give.” He said they provide knowledge, contacts, and people who can “lend a hand for the common good.”
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