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On World Sickle Cell Day, an Invitation to the Community

Gary H. Gibbons, M.D. - June 19, 2015

Each June, World Sickle Cell Day offers NHLBI a chance to reflect on our ongoing commitment to improving the lives of those living with this devastating blood disorder.  Sickle cell disease affects millions worldwide and about 90,000 to 100,000 people in the United States.  NHLBI- and NIH-supported research has made significant advances that have helped extend the lives of those who have sickle cell disease.  But we recognize much remains to be accomplished, such as enabling a generation of children with sickle cell disease to live without fear of suffering a stroke.  Our efforts include not only seeking a more-widely available cure but engaging and enriching the community affected by this life-long condition.    

This year, I am delighted to announce that NHLBI is hosting a Sickle Cell Disease Forum June 25-26, 2015.  The event, taking place on the campus of the National Institutes of Health in Bethesda, Md., represents a “full court press” that will bring together diverse members of the sickle cell disease community, including patients and their families, advocates, health care professionals, professional societies, government agencies, and others.  As a community, we will discuss and strategize about the future of sickle cell disease research.  The forum will include panel sessions and discussions that focus on issues affecting those living with sickle cell disease, including sickle cell research, pain management, disease treatment, and other timely topics.  For those unable to participate directly, please note that the forum will be streamed live via webcast and that participants can also participate in the discussion through Twitter and Facebook.

I recently had the pleasure of meeting Afia Donkor, an inspiring woman with an amazing story, who has sickle cell disease.  Afia’s story illustrates both the challenges of living with the disease and the life-changing transformation that can be accomplished through NHLBI’s research.  In addition to registering for the upcoming forum, I encourage you to read Afia's storyShe is one of a handful of people to have undergone a successful bone marrow transplant to cure her disease. 

Finally, our website has assembled a variety of resources, from our experts as well as other groups, about sickle cell disease, including general information, historical information, clinical trials, and articles about sickle cell researchers. 

World Sickle Cell Day may only happen once a year, but the topic is on NHLBI’s calendar every single day.  I hope you have a chance to participate in the Sickle Cell Disease Forum later this month and be sure to keep visiting the NHLBI website as we continue to add new sickle cell resources in the coming months.  I am proud to come to the office each day to work with the dedicated experts who are leading the charge to find better cures and new ways to improve the lives of those living with sickle cell disease.