ARGENTINA: Fashion show to call attention to plight of those with rare disorders and diseases

Record ID: 446830

  • Title: ARGENTINA: Fashion show to call attention to plight of those with rare disorders and diseases
  • Date: 1st March 2012
  • Summary: SLATE INFORMATION
  • Embargoed: 16th March 2012 12:00
  • Keywords:
  • Location: Argentina, Argentina
  • Country: Argentina
  • Topics: Fashion,Health
  • Reuters ID: LVA3VF2PP30T2LHSL383HNEOT4PL
  • Story Text: Argentines suffering from rare diseases organised a colourful fashion show in central Buenos Aires on Wednesday (February 29) to highlight their campaign for better health care and support.
    Crowds gathered in downtown Plaza San Martin to admire models wearing eye-catching outfits by local designer Miuki Madelaire.
    The event was arranged to coincide with the World Day for Rare Diseases and to draw attention to over three million Argentines that are believed to have 6,000 rare diseases.
    Sufferers say they are often poorly treated through lack of attention and expertise.
    Ana Maria Rodriguez, president of the Federation for Argentines with Rare Diseases, organised the show to shine a spotlight on the often-overlooked problem.
    "We are trying through this event, which is as rare as all of us, to show to the community the problems that affect patients: delayed diagnosis, few specialists, the difficulties in getting treatment, and the impact on the family life that these diseases have," said Rodriguez.
    Many supporters of the cause turned out to watch the show, which created a buzz around the central plaza.
    The aim of the event was to unite sufferers with non-sufferers and jointly call for more awareness.
    Argentina has failed to keep sufficient central records related to rare diseases, according to Rodriguez, and changing this has become her organisation's main priority.
    "One of the biggest difficulties we have is that in this country they don´t know what rare diseases have been diagnosed and treated. There is no statistic for reference. We can´t even say how many patients are represented in the 18 organisations that FADEPF works with. One of the primary objectives of this federation is to achieve a register of pathologists in Argentina and a database of patients, and to create treatment centres, where patients are not only perfectly cared for, but also where there is continued training for doctors and suitable areas for investigation," said Rodriguez.
    The World Health Organization (WHO) estimates that rare or uncommon diseases affect one in 2,000 people, about 8 percent of the world's population.
    In 2011, 56 countries world-wide held events to mark the World Day for Rare Diseases.
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