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June 19, 2009

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

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 newborns.

“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 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 Network.

“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 www.sickkids.ca. SickKids is committed to healthier children for a better world.

For more information, please contact:

Matet Nebres
The Hospital for Sick Children
Phone: 416-813-6380
email: matet.nebres@sickkids.ca

Suzanne Gold
The Hospital for Sick Children
Phone: 416-813-7654 ext. 2059
email: suzanne.gold@sickkids.ca