Supporters Set to Observe World Sickle Cell Day on June 19

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by Mary Chapman |

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From sporting the color red to “shining a light” on sickle cell, supporters are set to mark World Sickle Cell Day June 19 to call attention to the inherited blood disorder that affects millions of people globally and about 100,000 in the U.S.

In addition to raising awareness, the event seeks to better inform government policymakers, public authorities, researchers, industry representatives, healthcare professionals, and the general public about sickle cell disease (SCD) and the challenges its community faces, with an overall goal of improving the diagnosis and management of the disease.

For its part, the Sickle Cell Disease Association of America (SCDAA) is promoting Shine the Light on Sickle, a campaign supported by the federal Health Resources and Services Administration and billed as a day of community action for World Sickle Cell Day. The SCDAA is among the event’s organizers.

“We invite you to join with friends, family, neighbors, and others in your community as people around the nation, and across the globe, host and hold local gatherings to shine the light on sickle cell disease,” the organization states on an announcement webpage. “Together, we must, and will, find a universal cure for sickle cell disease!”

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Organizations and businesses nationwide are encouraged to submit details about planned activities on the Shine the Light website. Downloadable resources, which are also available in Spanish, include a flyer, logo, messaging ideas, and a shareable “call to action.”

Resources include a community gathering guide for those who seek to host or participate in a Shine the Light event. Ideas include asking civic leaders to light municipal structures in red — the official color of SCD — on June 19 and encouraging local officials to introduce a proclamation recognizing World Sickle Cell Day. Other ideas include organizing a blood drive, planting a tree, and hosting an outdoors movie night.

“A Shine the Light presentation will be hosted by Andrea Matthews of the Children’s Sickle Cell Foundation in Pittsburgh, Pennsylvania that will include case studies and discussions about how to advocate on behalf of SCD patients and their families.

Also on World Sickle Cell Day, the SCDAA will kick off its ninth annual Walk with the Stars fundraiser that supports SCD awareness, education, advocacy, and research. To date, the event has raised more than $500,000.

Elsewhere, the American Society for Apheresis is presenting a World Sickle Cell Day webinar June 15 that will be hosted by Mark Gladwin, MD, chair of the department of medicine at the University of Pittsburgh and principal investigator for multiple SCD clinical trials. The webinar topic will highlight the link between sickle cell disease and pulmonary hypertension.

In the United Kingdom, the Sickle Cell Society is marking the day by encouraging participants to raise funds to fight sickle cell and support patients by wearing red, hosting a “Come Dine with Me” evening, organizing a quiz night, washing cars, or sponsoring a run, walk, or bike event.