- Rare or orphan disease
is any disease that affects a small percentage of
- Pope Francis in a conference hosted by Vatican
spoke out of empathy for patients with rare diseases
- Globally around 350 million people are estimated to live
with a rare disease
In a progressive and heart-warming
move, Pope Francis spoke out of empathy and concern for patients with chronic
. In a conference hosted by the Vatican in April 2016 titled,
"Cellular Horizons: How Science, Technology, Information and Communication Will
Impact Society," the Pope called for more empathy towards patients especially
with rare and incurable diseases. The conference was co-hosted by the
Pontifical Council for Culture and the U.S.-based Stem for Life Foundation, a
non-profit based in New York that promotes healing treatments with the use of
adult stem cells.
The Pope exhorted the participants that we must create a
culture of care for such patients who otherwise feel neglected. While there may
not yet be a cure, the Pope said there is no reason not to provide care and
concern to such patients. He said that the complexities of rare diseases along
with social neglect made such patients feel "abandoned and neglected."
‘Pope Francis in a conference at the Vatican advocates for globalization of empathy towards patients with rare and incurable diseases.’
He expressed his views that all
patients regardless of culture and religion must have equal access to
healthcare and treatment. The Pope noted that the philosophy of "profit"
prevailed over "care" and patients with rare diseases were seen as economic
burdens. He said that this principle of profit was against the moral philosophy
of upholding the dignity and right to live of every human being. The Pope
raised the significant issue of the immense suffering at all levels for
patients and their families.
Much of the conference was
devoted to rare diseases and the prospects of using adult stem cells for
curative. The meeting saw a diverse audience as scientists, medical
researchers, doctors, patients, religious leaders and government officials
gathered to share their views. US Vice-president, Joe Biden was present as a
VIP guest at the conference. Joe's son Beau succumbed to brain cancer in 2015
and Joe was at the conference as part of his campaign tour to promote cures for
Rare Diseases Facts and Figures
- Currently there are 7000 rare diseases with newer ones
being discovered each year.
- 80% of all rare diseases are
genetic and usually present at birth or a little while after
- Rare diseases may be single-gene disorders like thalassemia and sickle cell anemia or
multiple-gene disorders like hereditary multiple
- Almost 50% of those
affected are children and 30% of these children will not live beyond the age of
- It takes
nearly 7 years to diagnose a rare disease
- 95% of
rare diseases do not have a cure
The Pope emphasized the creation
of interdisciplinary spaces between medical science and technology and human
concerns to pay attention to moral issues. He called for investment in
education and increasing funding for rare disease research and cures.
Significantly, the Pope raised the vital issue of legislations as part of
access to healthcare for patients with rare diseases.
The conference and the Pope's
forward looking statements and suggestions have generated hope among patients
and families with rare diseases. The conference was a rare confluence of
religion and science meeting to solve the world's critical problems especially
disease and suffering.
- Pope calls for "empathy" in treating
people with rare diseases - (http://www.alpha1.org/Healthcare-Providers/Education/News/ArtMID/7019/ArticleID/6937/Pope-calls-for-empathy-in-treating-people-with-rare-diseases)
- Pope Francis on rare diseases: patients should not
feel abandoned - (http://www.pagadiandiocese.org/2016/04/29/pope-francis-on-rare-diseases-patients-should-not-feel-abandoned/)
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