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Serving People With Rare and Neglected Pathologies at Heart of Upcoming Vatican Conference

Initiatives That Form Part of Conference Program Include a Meeting of European Catholic Healthcare Institutions, and Photographic Exhibition

Helping people with rare and neglected pathologies will be at the forefront of a Vatican conference this week.

The 31st International Conference of the Pontifical Council for Healthcare Workers (Health Pastoral Care) will have as its theme: “Towards a culture of health that is welcoming and supportive at the service of people with rare and neglected pathologies.” It will take place in the Vatican’s New Synod Hall, Nov. 10-12.

To be attended by 320 people from more than 50 countries, the conference is structured according to three key themes, which constitute the pedagogical key to its work: reform, to focus on current knowledge both in a scientific and a clinical sense; to treat better and with a welcoming and fraternal approach to the life of the patient; and to protect the environment in which humankind lives.

Presenting the conference this morning in the Holy See Press Office were secretary and undersecretary of the Pontifical Council for Healthcare Workers (Health Pastoral Care), Msgr. Jean-Marie Mupendawatu and Fr. Augusto Chendi, M.I., respectively; Dr. Marco Tartaglia, head of the research department on rare diseases and genetic disorders at the Bambino Gesù Pediatric Hospital, Rome; and Dr. Claudio Giustozzi, national secretary of the Italian cultural association “Giuseppe Dossetti: I Valori-Sviluppo e Tutela dei Diritti” ONLUS.

According to the World Health Organization, they explained, a disease is considered rare when it affects one person in two thousand, or fewer. From around five to eight thousand pathologies are defined in this way, of which 80 percent are of genetic origin, and often life-threatening. It is estimated that around 400 million people worldwide are affected.

The WHO also estimates that more than a billion people, of whom almost half are children, are affected by “neglected” illnesses. The majority have an infectious cause and are widespread in geographical areas with a tropical climate, where the populations live without access to drinking water, with poor hygiene, inadequate housing conditions and limited or no access to healthcare services.

“In summary, in conditions of poverty that cause grave health problems for the world’s poor”.

Not only does this situation pose a great challenge from an epidemiological, scientific and clinical point of view, but also from a cultural and political perspective, clearly indicating the need for responsibility and commitment at global level by all interested parties.

“The Church, which throughout her two millennia-long attention for the world of the sick has always been aware of service to the suffering and the ill as an integral part of her mission, intends by organizing this conference to place herself at the service of those affected by rare and neglected pathologies, offering a response of an educational, cultural and pastoral nature.”

“The treatment and care of the sick in general and those affected by rare and neglected pathologies in particular are an inescapable work of evangelical corporal mercy. This pastoral urgency, with special attention to healthcare workers and decision-makers, finds in Pope Francis’ ecclesial vision a renewed zeal, as demonstrated by the various initiatives and actions promoted and realized in this current Extraordinary Jubilee of Mercy.”

Msgr. Mupendawatu concluded by repeating the Holy Father’s words, which appear in the Presentation of the Conference Program: “The Pope considers it to be a priority for the Church, in this historic moment, to be dynamically ‘outbound’ to offer concrete witness to Divine Mercy, making herself a ‘field hospital’ for the ‘rejected’ who live in every existential, socio-economic, healthcare, environmental and geographic periphery in the world.”.

The initiatives that form part of the Conference program will include a meeting of European Catholic Healthcare Institutions, and a photographic exhibition on rare and neglected illnesses that can be visited in the entrance of the Paul VI Hall, starting this Thursday.

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