The Global Sickle Cell Disease Network
Facilitating global collaboration to reduce the burden of
Sickle Cell Disease around the world

The WHO has estimated that, each year, 220,000 babies are born with Sickle Cell Disease (SCD) in Africa and that, in some African countries, SCD accounts for up to 16% of deaths of children under the age of 5. Both The World Heath Organization and the UN Secretary General have recently urged governments, civil society and all other partners to do their part to improve the lives of people with SCD. SCD researchers have a key role to play in helping put advocacy into action.

To this end, the newly formed Global Sickle Cell Disease Network is bringing together SCD clinicians and researchers from around the globe to share information and expertise through North-South and South-South partnerships; ascertain the best ways to build the capacity of centres in Africa and other developing regions to diagnose, treat and prevent SCD; provide up to date information about the disease, and engage in critical research that will directly impact the health outcomes for those with SCD throughout the world.

After its initial very successful meeting at the National SCD Centre, in Cotonou, Benin (report available for download by clicking here), the Network is now in the process of establishing Working Groups on the following topics:

• Natural history of SCD; Neonatal Screening Programs, including Education, Counseling and Management
• Infectious Diseases (including Malaria and Bacterial Infections) in patients with SCD
• Hydroyurea Therapy in Africa and Other Developing Regions
• Genetic Factors Involved in Phenotypic Diversity
• Developing Guidelines for the Establishment/Designation of SCD Comprehensive Care Centres
• Developing Clinical Care Guidelines

Progress reports from each of these groups will be presented at the next major meeting of the Network. That meeting will be held within the First Global Congress on Sickle Cell Disease, July 20-23, 2010, in Accra, Ghana, co-sponsored by the Sickle Cell Center at Children's Hospital of Philadelphia and The Sickle Cell Foundation of Ghana.

For more information about The Global Sickle Cell Disease Network, The First Global Congress on Sickle Cell Disease, and/or to become involved in a Global SCD Network working group please contact Dr. Isaac Odame, The Global Sickle Cell Disease Network, The Programme for Global Paediatric Research, The Hospital for Sick Children, Toronto: Isaac.Odame@sickkids.ca