Message from the Prefect of the Dicastery for the Integral Human Development Service on the occasion of the XIII Day of Rare Diseases (29 February 2020), 29.02.2020
We publish below the Message of the Prefect of the Dicastery for the Integral Human Development Service, the Most Card. Peter Kodwo Appiah Turkson, on the occasion of the XIII Day of Rare Diseases, which occurs today February 29:
Message from Card. Peter K. A. Turkson
To the Presidents of the Episcopal Conferences,
To the Bishops in charge of Health Pastoral Care,
To men and women religious,
To socio-health and pastoral workers,
To the Volunteers and to all the People of good will,
And, above all, to the Dear Brothers and Sisters affected by rare diseases and their Families,
Rare Disease Day puts the emphasis this year on fairness and fairer conditions for people affected by these conditions. There are over 300 million people worldwide with a rare disease, a considerable number that cannot be ignored and deserves attention.
Rare diseases are often difficult to diagnose and, more often than not, patients affected by these pathologies and their families live in stigma, in solitude and with a sense of helplessness, often exasperated by the difficulties in having a specific treatment for the pathology. rare and adequate care. Unfortunately, this situation is perceived even more serious in all those countries where the health system is more vulnerable.
We must not forget that the fundamental right to health and care pertains to the value of justice and that the unequal distribution of economic resources, especially in low-income countries, does not allow to guarantee a health justice that protects the dignity and health of each person. , especially the most needy and poor.
In rare diseases, scientific research plays a substantial role in improving the life of the sick, not only in identifying the pathology and providing available therapy but also in indicating the most suitable assistance. At the same time, scientific research needs the participation of the sick to obtain meaningful results targeted to their needs. For this reason, the scientific knowledge and research of the pharmaceutical industries, even if they relate to their own laws, such as the protection of intellectual property and a fair profit as a support for innovation, must find appropriate compositions with the right to diagnosis and access to essential therapies especially in the case of rare diseases .
The principles of subsidiarity and solidarity must inspire the international community as well as health policies to ensure that everyone, especially the most vulnerable populations, is guaranteed efficient health systems, fair access to diagnosis and treatment, as well as support and assistance. specific to the sick and their families .
The impact of rare diseases on the daily life of families is disruptive both from a psychic, emotional, physical and economic point of view. They often make up for the absence or shortage of health care and social assistance. Rare disease, in fact, involves all aspects of family life: we must not only deal with the problem of disease but we must also worry about all the other aspects of life, such as, for example, nutrition, activity rehabilitation or sports, organize free time.
It is important to study activities, in synergy with the various actors present in the area, which can enhance the potential of rare patients, as, sometimes, the patient can feel a lack of humanity precisely because "in the disease the person feels compromised not only one's physical integrity, but also the relational, intellectual, affective, spiritual dimensions; and therefore awaits, in addition to therapies, support, concern, attention ... in short, love ".
It would be really nice if all together, alongside family members, health workers, social workers, pastoral workers and volunteers, in a spirit of fraternity, we took care of our brothers and sisters suffering from a rare disease, integrating medical care with activities and commitments social networks that make them feel a dynamic part of society.
I entrust to Mary, Salus infirmorum, all those who suffer from rare diseases, so that it helps us to be attentive to each other's needs and to know how to give with a generous heart.
Cardinal Peter Kodwo Appiah Turkson
 Pontifical Council for Health Care Workers, New Charter for Health Care Workers, 2016, Libreria Editrice Vaticana, n. ninety two.
 Ibid, nn. 141-142.
 Francis, Message for the World Day of the Sick, 11 February 2020.