SickKids doctors to address the UN this week

    Doctors coordinate an international network to reduce the adverse effects
    of Sickle Cell Disease around the world

    TORONTO, June 19 /CNW/ - The United Nations has declared this Friday,
June 19, 2009 the first-ever Sickle Cell Anaemia Awareness Day, and two
leading physicians from The Hospital for Sick Children (SickKids) will mark
the occasion by speaking to international leaders about recent initiatives to
reduce the effects of sickle cell disease (also known as sickle cell anaemia)
around the world.
    The UN Sickle Cell Anaemia Awareness Day organizers have invited Dr.
Isaac Odame, Staff Haematologist, Project Investigator and Co-Director of the
Sickle Cell Disease Program at SickKids and Dr. Alvin Zipursky, the Chair and
Scientific Director of The Programme for Global Paediatric Research (PGPR) and
former Head of the SickKids Division of Haematology/Oncology, to present on
behalf of the Global Sickle Cell Disease Network, which they are coordinating,
to raise awareness about this international public health problem.
    Sickle cell disease is a painful and deadly genetic disorder that affects
about five million people in Africa. An estimated 220,000 babies are born with
the disease in Africa every year, and in many of these countries 50 per cent
of the children die before the age of five.
    "In Ontario, the prospects of a child with the disease surviving until
adulthood are far greater than in developing countries," says Cathy Seguin,
SickKids Vice President of International Affairs. "A key component of
successful treatment is early diagnosis."
    In North America, sickle cell disease touches over 80,000 people. In
2006, the Ontario government made the sickle cell disease screening test
mandatory for newborns. Dr. Odame was instrumental in implementing this
province-wide policy. Now, in collaboration with network partners, he wants to
encourage the rest of the world to develop similar screening programs for
    "In Ontario, no child should die as a result of sickle cell disease
within their first five years," says Odame. "With worldwide collaboration and
adequate funding, this goal can be reached in every country around the globe."
    During their presentation at the UN, Odame and Zipursky will discuss a
recent conference they led in the Republic of Benin. PGPR, a global program
that is part of SickKids' international initiatives, partnered with the
National Sickle Cell Disease Centre in Cotonou, Benin. The conference brought
together 80 sickle cell disease experts from 25 countries. Odame and Zipursky
are now working in partnership with these experts on the Global Sickle Cell
Disease Network - the first initiative of its kind to focus on research and
clinical care for this disease around the world.
    The goals of the newly-formed Global Sickle Cell Disease Network include
establishing mechanisms for creating regional centres of excellence through
partnerships with governments, donor and funding agencies, NGOs, the private
sector; developing guidelines for sickle cell disease clinical care that can
be adapted to local and regional needs; and creating protocols for
international research.
    In May, PGPR released a report on the Cotonou meeting; soon after the UN
Sickle Cell Anaemia Awareness Day organizers invited Odame and Zipursky to the
UN Headquarters to present on behalf of the Global Sickle Cell Disease
    "The endorsement of the UN for this work is enormous," says Zipursky.
"Ultimately our goal is be able help other countries help themselves in
detecting and treating sickle cell disease."
    Sickle cell disease is an inherited blood disorder that affects the red
blood cells. The red blood cells become sickle shaped (crescent shaped) and
can clog blood vessels, causing great pain, strokes and damaging organs.
    PGPR works with researchers, professional societies, NGOs, and
governments around the world to address global health issues affecting infants
and children. PGPR informs, educates, facilitates international research
cooperation and collaboration and advocates for research to improve the health
of all children. With partners around the world, PGPR extends the reach of
SickKids to improve children's health through excellence in clinical care,
education and biomedical research.

    The Hospital for Sick Children (SickKids), affiliated with the University
of Toronto, is Canada's most research-intensive hospital and the largest
centre dedicated to improving children's health in the country. As innovators
in child health, SickKids improves the health of children by integrating care,
research and teaching. Its mission is to provide the best in complex and
specialized care by creating scientific and clinical advancements, sharing our
knowledge and expertise and championing the development of an accessible,
comprehensive and sustainable child health system. For more information,
please visit SickKids is committed to healthier children for
a better world.

For further information:

For further information: Suzanne Gold, The Hospital for Sick Children,
(416) 813-7654, ext. 2059,

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