By Devin Watkins
As the world marks the 16th World Rare Diseases Day on Sunday, Pope Francis lifted his voice in prayer for the many people, especially children, afflicted by a rare disease.
Speaking after the Angelus prayer, the Pope also thanked medical researchers for their work to diagnose and discover treatments for rare diseases.
“When dealing with a rare disease, solidarity networks are more important than ever,” he said. “They help keep those suffering from feeling alone and promote the sharing of experiences and advice.”
Pope Francis also expressed his closeness to those who are ill, especially children, and their families.
He urged everyone to be “near to sick children who are suffering, praying for them and helping them feel the caress of God’s love and tenderness.”
“Let us pray for all people who have a rare disease,” said the Pope. “We pray especially for children who suffer.”
Cardinal Turkson’s message for Day
Separately, the Prefect of the Dicastery for Promoting Integral Human Development issued a message on Sunday calling for the protection of society’s most vulnerable members.
Cardinal Peter Turkson noted that over 6,000 disease are considered “rare”, and most (72%) are hereditary while 70% start in childhood.
He said people with rare diseases “are among the most vulnerable groups in society.” They suffer from maladies which often have no cure and are usually life-long and degenerative.
Lack of care
The Cardinal lamented that many of these diseases are often neglected by medical science, and are therefore difficult to diagnose and treat. They and their families thus lack access to proper educational, economic, and social care.
“All this prevents these dear brothers and sisters of ours from integrating into society, realising their potential, participating actively in family, work and social life, which is essential for the development of their personality, thus generating discrimination and loneliness.”
Guarantee right to health
Cardinal Turkson said the Covid-19 pandemic has worsened many of these difficulties, making treatment and proper care even more difficult to procure.
So, the Cardinal urged policy makers and institutions to “guarantee the right to health” for all people, especially those suffering from rare diseases.
He said this can be done by “promoting international cooperation, knowledge-sharing and more sustainable and resilient health systems which do not forget the needs of the most vulnerable and leave no one behind.”
Culture of care
The Cardinal Prefect went on to note that a culture of care can only result from “the promotion of the dignity of every human person, solidarity with the poor and the defenceless, the common good and the protection of creation.”
He said a more humane society can be built by ensuring inclusive access to healthcare for people with rare diseases.
Hope for rare disease sufferers
Finally, Cardinal Turkson encouraged Christians to take this time of Lent to “cultivate hope and to love those who are suffering, abandoned, and distressed.”
“With these words I conclude this brief Message,” said the Cardinal, “and entrust to Mary, Mother of Mercy and Health of the Sick, all those affected by a rare disease, their families, those who care for them lovingly and all those who do their best to protect and recognise their right to care and to live a full life.”