A disease is defined as rare when it affects fewer than 5 in
10,000.There are 1 million 200 thousand people with rare
diseases in Iran. Experts believe that inheritance and
consanguineous marriage are the two major causes of the said
diseases.
Diagnosis of rare diseases is difficult,time-consuming and very
costly.However,there is no effective treatment approach and the
drugs are merely prescribed to prevent the progress of the
disease.Most of the patients are fallen away from the society and
have gradually become depressed and unwilling to communicate
with others and this is sometimes more painful than the disease.
Lives of these patients is full of pain and suffering and they hope
that one day, a cure is found for their pain to live slightly more
comfortable. Life expectancy/hope is the most effective
medication for them to continue life.
I, Mona Hoobehfekr, am an Iranian photographer born in Tehran, Iran in 1986. I graduated
from University of Art, Tehran in “Photography”. I was attracted to documentary photography
and photojournalism and in 2006, I started working at Iranian Studentsʼ News Agency (ISNA).
I have been covering significant official events/programs, some of the most outstanding ones are
top-rank diplomat trips, 2014 Asian Para Games and frequent trips to Vienna and Geneva to
cover the entire Iran & 5+1 Nuclear Negotiations.
My photos have been repeatedly nominated and awarded prizes in various festivals and contests
and I have participated in a few group exhibitions in Iran and abroad. I was chosen as the
“Young Talent (under 25 yrs.)” of the “Image of the Year” national festival for three subsequent
years and one of the exhibitions was held in a few foreign countries. Many of my photos also
appear in international agencies like AP, AFP, Reuters, IPA, ....
