March 30, 2023

Pope: on Rare Diseases, join forces for healthcare for all

For Francisco, the strength of the Association and the Federation is “the ability to give voice to so many who, alone, could not be heard, and thus represent a need.” The meeting of the Pope with the delegation of the Italian Federation of Rare Diseases took place this morning (13) in the Vatican

Jane Nogara – Vatican News

Pope Francis received this Monday morning (13), a Delegation of the Italian Federation of Rare Diseases. Recalling the World Day for Rare Diseases on February 28, the Pope spoke about the motto of the Federation “Unite us”, a key word that explains the sharing, the union of experiences, strengths, hopes. “Let’s unite” is the key and fundamental word that deserves reflection. Francis delivered the prepared speech and spoke with the cuff to the audience. Here is a summary of the prepared speech:

I share

And Francisco reflected on the first value of the organization that is I share. “It’s nesessery. And since the disease is rare, it is necessary to refer to an association that brings together people who face this disease every day: they know the symptoms, treatments, treatment centers, etc. “In the beginning, this is a forced path, a way out of the agony of being alone and unarmed before the enemy. Little by little, however, the way to share becomes a choice, supported by two motivations.” Quoting the following:

“The first is the realization that it is useful, it helps us, it offers us solutions, to guide us a little through the fog of this situation”

“And The second motivation comes from the pleasure of human relationships”, Francis reminded here that “friendship with people we didn’t even know yesterday is good for us” and that this can help us “bring together a very heavy situation.” So affirming: “This is the first great value I see in you, in your associative reality.”

Very common

“Then there is another value,” he continued, “equally important, but different, on a social and political level. And potential that a compound as yours must contribute decisively to very common. In this case, to improve the quality of health services of a country, a region, a territory”.

“Good policy depends on the input of associations, which, on specific issues, have the necessary knowledge and attention to people who are at risk of neglect.”

Aid to the policy of the common good

Finally, the Pope emphasized the decisive point of the importance of Unions:

“This is not about claiming benefits for the category itself, it is not about good politics. but to fight so that no one is excluded from the health service, that no one is discriminated against, that no one is punished”

Then explaining: “Realities like yours can put pressure on the national and commercial barriers that must be overcome to share the results of scientific research to achieve goals that today seem very distant.” So recognizing that it’s hard to commit when you’re struggling with your own issues.”

“But therein lies the power of association, and even more of federation: the ability to give voice to so many who, alone, could not be heard, and thus represent a need.”

Don’t just ask, but give

“In relation to institutions, at various levels, you not only ask, but also give: knowledge, contacts and above all people, people who can help for the common good if they act with a spirit of service and social conscience. “.

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