Pope calls for inclusion policies for people with rare diseases

By Lisa Zengarini

Pope Francis on Monday welcomed a delegation of the Italian Federation of Rare Diseases (UNIAMO), a non-profit alliance of over 150 associations that work together to improve the lives of people living with a rare disease, support their families, and advocate for their rights by establishing networks with key stakeholders, including policy makers.

In his prepared remarks  the Pope highlighted the values underpinning the work of the Federation. The first value is that of sharing summed up in its motto “Let’s unite” (UNIAMO), that is joining experiences, forces, and hopes.

The benefits of sharing

At first, Pope Francis noted, sharing is “a necessity” for those affected by a rare disease and their families who need to refer to an association that brings together people dealing with the same problem, that know the symptoms, therapies, and treatment centers.  

Slowly, however, it  “becomes a choice”, for basically two reasons. One reason is the realization that it helps and offers at least temporary practical solutions 

Another reason, the Pope continued, is the discovery of the “pleasure of human relationships” and of the good procured by new friendships with people who can help carry the burden of a difficult situation together.

Fighting exclusion

A second fundamental value embodied by UNIAMO, is its potential to contribute to the common good, and specifically to improving the quality of the health service at a national an local level.

Indeed, noted Pope Francis, “a good politics” also depends on the contribution of associations, which, on specific issues, “have the necessary knowledge and attention to people who risk being neglected” and marginalized.

It is not a question of claiming favours for a specific category, “but of fighting so that no one is excluded from the health service, no one is discriminated against, or penalized,” the Pope stressed, referring also to the field of scientific research.  

Working with institutions for the common good

Pope Francis further remarked that, by giving voice “to many who, alone, wouldn’t be able to make themselves heard” associations like UNIAMO not only ask for support, but also give an important contribution   to public institutions, with their expertise contacts, and above all, the people willing to work for the common good

The Pope therefore concluded by encouraging the Italian network to continue its commitment and invoked the Blessed Virgin to accompany every person and family affected by a rare disease.