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Rome Reports

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Cardinal Defends Dignity Of Patients Sick From Rare Diseases

On Rare Disease Day, the Giuseppe Dossetti association held a congress in Rome called "Rare Diseases and Disabilities."

Physicians, scientists, politicians, pharmacists and members of various associations attended the congress with the aim of raising awareness about these type of diseases. Scientists began to study them in the 1980’s.

Marina Del Bue Assobiotec ; 80 percent of rare diseases have a genetic basis, therefore, we believe that the contribution of biotechnology is extremely important. In fact, today thanks to some biotechnological techniques we been able to gain benefits on some of the main diseases. ;

These diseases present many diagnostic and research difficulties. That’s why there is a lack of effective treatments.

One of these is the “Friedreich?s Ataxia.” An extremely rare neurodegenerative disease that poses serious heart problems and still no medicine has been found to cure it.

Cardinal Javier Lozano Barragan, president of the Pontifical Council for the Pastoral Care of Health Care Workers, presented the "Lectio Magistralis" on the right to health.

Cardinal Javier Lozano Barragan President of the Pontifical Council for the Pastoral Care of Health Care WorkersThe goal should always be to preserve the non-negotiable dignity of human life, of the human person, because people are who they are, not because of what happens to them or of what they receive, for example the vegetative state, the quality of life is not the same as the dignity of the human person.

The Giuseppe Dossetti association is working with leaders of the Italian government to issue a decree that increases the benefits of those who suffer from rare diseases.