On February 13, Pope Francis received members of the delegation of the Italian Federation of Rare Diseases and encouraged them to continue their mission to provide better and more inclusive medical services for patients with rare diseases.
(Vatican News Network)On the morning of February 13, Pope Francis received members of the delegation of the Italian Union of Rare Diseases (UNIAMO) in the Vatican. The Federation is a not-for-profit group of more than 150 associations working together to improve the lives of people with rare diseases, support their families, and maintain Rights of people with rare diseases.
The Pope first mentioned the federation’s motto “Let us unite”, which means that let us gather experience, strength and hope. The Pope affirmed the active role and value of this association in the family and in society.
“Sharing” is “necessary” for those who suffer from rare diseases and their families, the Pope said, and they need to turn to a society that brings together those with the same disease because it knows Symptoms, Remedies and Treatment Center. Slowly this “way of sharing” became a choice, because it helped and provided at least a temporary practical solution, it also allowed people to discover “the joy of relationships” and to build new relationships between people with shared difficulties. Benefits of Friendship Relationships.
The Pope then said that the federation can contribute to the common good of society, especially in improving the quality of health services at the national and local levels. “Good politics,” the Pope noted, also depends on the contribution of numerous associations that “bring the necessary knowledge and attention to those who are at risk of being neglected and marginalized” on specific issues.
The pope emphasized that it is not a matter of securing benefits for special categories of people, “but so that no one is excluded from health services, no one is discriminated against or punished”. The Pope also mentioned the field of scientific research, saying: “Your reality can generate impetus, cross national and commercial barriers, and share the results of scientific research, so as to achieve goals that seem very distant today.”
“This is the power of associations and federations: being able to give a voice to the many who cannot speak for themselves, and thus becoming a need. In that sense, involving patient representatives and being heard at an early stage in the decision-making process Their opinion matters.” “Most importantly, people can contribute to the common good if they act in a spirit of service and citizenship.”
In conclusion, the Pope encouraged the Italian Federation for Rare Diseases to continue to fulfill its commitments, and prayed for the Virgin Mary to be with every person and family suffering from a rare disease.
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