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Message on the occasion of the Ninth World Rare Disease Day (Working translation)

Pubblicato da Pontificio Consiglio per gli Operatori Sanitari in AltreGiornate · 29/2/2016 11:59:08

Message of H.E. Msgr. Zygmunt Zimowski
President of the Pontifical Council for Health Care Workers
(for Health Pastoral Care)
on the Occasion of the
Ninth World Rare Disease Day

29 February 2016

‘The voice of the patient at the centre.
Join us in making the voice of rare diseases heard’


Dear Brothers and Sisters,

For some years the Pontifical Council for Health Care Workers (for Health Pastoral Care) has followed attentively the various initiatives in favour of those who have rare diseases and their family relatives who, with their concern, are at times the only people who give voice to a problem that cannot be ignored by the various civil, scientific, civil and pastoral institutions.
 This global initiative, which seeks to give the right emphasis to these pathologies and to increase knowledge about them, also finds a growing interest in the Church to ensure that abandonment and isolation do not befall those people who, although they have diseases whose incidence is minimal or rare in terms of numbers, certainly cannot leave us indifferent. Indeed, their condition, as is indicated by the theme chosen for this tenth World Day – At the centre the voice of the patient. Join us in making the voice of rare diseases heard – cannot but find an echo in our hearts and in adequate activity at the level of research and treatment.
 This is a matter, in particular, of making these people increasingly protagonists who are equipped with the necessary points of reference; and at the same time of sensitising the relevant authorities, health-care workers, researchers, the pharmaceutical industry and anyone who has a sincere interest in rare diseases. All of this to break that curtain of silence or separateness which in many cases runs the risk of concealing a problem which, instead, concerns the whole of society.
  The Church also feels involved in this undertaking and is continuously urged by Pope Francis to grow and walk forward in solidarity.

 Solidarity involves sharing the situations of other people, whoever they may be; feeling participants in their sufferings; and planning and engaging in effective activities that provide support, always with an approach of inclusion. Thus the ethics of solidarity cannot be reduced to the – albeit indispensable – functions of social institutions and is not the exclusive task of those who practise certain professions. The other is someone who calls on us because of the very fact of being a person and being in need. This is what Jesus wanted to teach us through the parable of the Good Samaritan (cf. Lk 10:25-37).

 Charity, which starts from an inner approach of com-passion and is translated into concrete actions and commitments of nearness and care, is able to bestow fullness of meaning on relational life. In this way, charity takes on the form of sharing: being-with, and dedication: being-for.

In this way, attentive listening to the voices of patients with rare diseases also constitutes an initial approach by which to build up – at times with a great deal of effort – the common good under the banner of a solidarity that takes upon itself and adopts human requests and aspirations, especially those that are least considered.
 If we look closely, we are dealing with complex problems that can only be addressed within a wider framework, in which are located, with their respective responsibilities, different and complementary professional and institutional figures
 Through this Pontifical Council, the Church, in making her own the voice raised in many areas to achieve the common good and justice in the social/health-care field, intends to bring to the attention of this sector and the various institutions of scientific research her own pastoral activity connected with the field of Rare and Neglected Diseases, understood as diseases that invite people in a special way to engage in solidarity. This concern of the Church will be specifically expressed at the next international conference to be organised by this Pontifical Council for Health Care Workers which will take place in the Vatican on 10-12 November 2016. This initiative, held almost at the end of the extraordinary Jubilee Year of Mercy, will be a further opportunity to value the work of corporeal mercy of caring for the sick. It will take place under the heading of supportive nearness to people with rare pathologies and to those poor and vulnerable populations marked by neglected diseases who usually live in some of the most remote rural areas of the world.
 In expressing by this Message keenly-felt nearness to so many of our brothers and sisters marked by  difficulties and suffering because of rare pathologies, I entrust this World Day to the Blessed Virgin Mary, Health of the Sick. May every request that arises from the hearts of those who suffer encounter listening and concerned solidarity in those who believe and in every person of good will! Renewed and sustained by He who is the incarnation of the Mercy of the Father, may many of them become in their turn workers of mercy and peace!




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