Today marks the IX World Day of Rare Diseases, and the Vatican official in charge of the health care ministry council, noted the day by affirming that although these people suffer “from diseases whose incidence is minimal or rare numerically” they are not “abandoned or isolated” by the Church.
The message from Archbishop Zygmunt Zimowski, president of the Pontifical Council for Health Care Workers, is titled “The Patient’s Voice at the Centre. Join Us in Making the Voice of Rare Diseases Heard”.
It emphasises how, for years, this dicastery has closely followed the various initiatives for those affected by such diseases, as well as focusing on their families, who are sometimes the only ones who give voice to a problem that should not be ignored by the various civil, scientific, and pastoral agencies.
“This global initiative”, the prelate explained, “which aims to give proper emphasis to these diseases and to increase knowledge, also finds growing interest in the Church, so that those who, although suffering from diseases whose incidence is minimal or rare numerically, are not abandoned or isolated. They certainly cannot leave us indifferent. Indeed, their condition, as the theme chosen for this 9th day indicates, cannot but find echo in our hearts and in appropriate research and care”.
“In particular”, he specified, “this means making these persons more and more the protagonists, equipped with the necessary reference points and, at the same time, raising the awareness of the competent authorities, health professionals, pharmaceutical industry, and anyone who has a sincere interest in rare diseases. All in order to break the curtain of silence or exclusivity that is likely, in many cases, to hide a problem that, however, concerns the whole of society”.
“The Church also feels involved in this commitment, constantly spurred by Pope Francis to grow and walk in solidarity. … By means of this dicastery, the Church, as the voice that can from many places have the leverage to achieve the common good and justice in the social and health care field, intends to bring the attention of its pastoral outreach in the area of rare and neglected diseases – defined as diseases that particularly call for solidarity – to this area and to the various scientific research institutions”.
“This ecclesial attention will have a specific expression at the next international conference organized by the Pontifical Council for Health Care Workers, which will take place at the Vatican from 10 to 12 November, 2016. This initiative, almost at the conclusion of the Extraordinary Jubilee of Mercy, will be a further occasion for highlighting the work of corporal mercy that is assistance to the sick. It will be a sign of solidarity with persons affected by rare diseases as well as with the poor and vulnerable populations marked by neglected diseases, who usually live in the most remote rural areas of the world”.