This morning, February 13th, Pope Francis received a delegation from the Italian Federation of Rare Diseases and encouraged them to stay united in their suffering. 

The Pope emphasized the need to “share” and come together in these situations: “When a father and mother discover that their child is suffering from a rare disease, [they need to] know other parents who have lived and are living the same experience.” 

The Holy Father assured the delegation that this is a “necessity,” although at first, it is a “forced path, an escape from the anguish of being alone and unarmed against the enemy.” 

“Gradually, however, the way of sharing becomes a choice,” he continued. 

The Pope told the delegation that these relationships allow us to “orient ourselves a bit in the fog of this situation” and represent “the pleasure of human relationships, the good that friendship with people who we didn’t even know yesterday does to us, who now trust us with their experiences to help us carry a burdensome condition together.” 

Later, the Holy Father said that “good politics also depends on the contribution of associations, which, on concrete issues, have the necessary knowledge and pay attention to the people who run the risk of being neglected.” 

However, he explained that “it is not about demanding favors for one’s category, that is not good politics; but about fighting so that no one is excluded from the health service, no one is discriminated against, no one is penalized.” 

In addition, he praised the association’s ability to “give voice to many who, alone, could not be heard, and thus represent a need.” 

For this reason, Pope Francis said that “it would be important to involve and listen to the representatives of patients in an early stage of the decision-making process.” 

“I ask the Virgin to accompany every person and every family facing a rare disease,” the Holy Father said.