SiNERGe and Sickle Cell Disease Association of America, Inc. (SCDAA) are collaborating with sickle cell advocacy groups, community-based organizations, hospitals, governments and other key stakeholders in the sickle cell community on Shine the Light on Sickle Cell, a 24-hour awareness campaign to celebrate the 10th anniversary of World Sickle Cell Awareness Day on June 19, 2019.
June 19th was officially designated by the United Nations as World Sickle Cell Awareness Day. The international awareness day is observed annually with the goal to increase public knowledge and an understanding of sickle cell disease (SCD) and sickle cell trait (SCT), and the challenges experienced by patients and their families and caregivers. On June 19th and within the month of June, individuals and organizations are hosting a number of activities across the country.
“June 19 is a day of unity and purpose for the sickle cell community,” says Dr. Sophie Lanzkron, associate professor of medicine at the Johns Hopkins University School of Medicine and co-director of the SiNERGe collaborative. “We’re proud to work with the SCDAA to highlight the need for increased awareness about sickle cell disease and its impact on individuals and their families here in the U.S. and abroad.”
SCD is a global health problem affecting millions of people around the world. It is estimated that approximately 100,000 Americans have the disease, and more than 1,000,000 worldwide have sickle cell trait. Each year, approximately 1,000 babies in the United States are born with SCD, and there is no universal cure for this life-threatening disease.
“SCDAA is proud to collaborate with SiNERGe on this important national awareness campaign that has brought together the diverse stakeholders within the sickle cell community to create events, activities and opportunities to bring attention to sickle cell disease and to encourage individuals to get involved in our efforts to advocate on behalf of the those affected by this disease,” said SCDAA President and CEO Beverley Francis-Gibson.
Visit the Shine the Light on Sickle Cell Campaign Facebook page at www.facebook/com/pg/ShineTheLightOnSickleCell/events to learn about the events happening across the country on June 19 and in the month of June.
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Daily Archives: June 17, 2019
GBT Awards More than $200,000 in Grants to Five Nonprofit Organizations through New ACCEL Program Aimed at Improving Access to Healthcare for People Living with Sickle Cell Disease
Innovative Healthcare Programs for Sickle Cell Community
On June 10, 2019, Global Blood Therapeutics, Inc. (GBT) (NASDAQ: GBT) announced that five nonprofit organizations have been awarded more than $200,000 in grants through the company’s new Access to Excellent Care for Sickle Cell Patients Pilot Program (ACCEL).
Five grant recipients – the Center for Comprehensive Care and Diagnosis of Inherited Blood Disorders (CIBD) and the Sickle Cell Disease Foundation (SCDF), the James R. Clark Memorial Sickle Cell Foundation, The Johns Hopkins University School of Medicine, the MAVEN Project (Medical Alumni Volunteer Expert Network) and the Sickle Cell Foundation of Georgia – will each receive grants to accelerate the development of promising programs that have the potential over time to deliver high-quality healthcare to people living with sickle cell disease (SCD).
“We created the ACCEL program to help address the significant challenges that people living with SCD face every day in accessing quality healthcare in their communities. One solution to addressing these inequities is to encourage non-profit organizations to develop innovative programs that can ensure more children and adults living with SCD get access to high-quality care,” said Jung E. Choi, chief business and strategy officer, and head of patient advocacy and government affairs at GBT. “We are thankful to the many applicants who submitted compelling proposals.”
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