Sickle Cell Advocacy Group Wants to Have 'Conversations'
ATLANTA, Nov. 2, 2020 /PRNewswire/ -- The Sickle Cell Consortium, a U.S.-based non-profit, organized to ensure sickle cell patients and caregivers are at the center of disease education, research, legislation, and policy announced today that its 7th Annual Sickle Cell Disease Patient and Family Symposium will be a virtual event focused on "conversations" between patients and caregivers of people who suffer from sickle cell disease.
The theme of this year's event is "Citizen Scientist: Harnessing the Power of the Patient Voice." It is the only conference organized entirely by "Warriors" (sickle cell disease patients), and their caregivers. The event's title sponsor is Global Blood Therapeutics, and will include a "Paint & Chat" where attendees will receive paint supplies and other materials, which will be delivered to attendees in a creatively branded package to help make the event more interactive and hands-on.
"The Sickle Cell Community Consortium pioneered the virtual event for this community," says Sharonda Sikes, the organization's Director of Operations. "We've created a logistical engine for delivering these events in partnership with technology companies. We are very excited about how we're leveraging technology to keep our CBOs and the sickle cell community at-large engaged and informed."
The Consortium, headed by Dr. Lakiea Bailey, a research scientist who was herself diagnosed with sickle cell disease at the age of three, has plans to create a unique experience for the hundreds of attendees who are expected to take part in the event.
"This year, we're focused on giving sickle cell patients, their families and caregivers a forum to discuss the state of the disease, the challenges we currently face and our optimism about the future," says Dr. Bailey. "In the face of Covid-19, an in-person event was not an option, so it was important to be innovative in how we transitioned to a virtual experience. We've planned a number of fun activities this year, along with the vital information SCD patients count on us to provide."
Sickle cell patients are more susceptible to the impacts of COVID-19, and have significant challenges managing hospital stays, pain crises, and other treatment as a result of the pandemic; challenges which had already been made more difficult by the nation's opioid crisis.
"Because of the lack of awareness of sickle cell disease, this community regularly experiences various forms of discrimination when seeking treatment, especially for pain management. As the opioid crisis has gotten worse, the mistreatment of minority sickle cell disease patients has gotten worse," says Dr. Bailey. "We're bringing these patients together to talk about what they're experiencing, strategies for navigating the realities brought on by Covid, and to celebrate our collective resilience."
The "7th Annual Sickle Cell Patient and Family Symposium" will be held November 19th through November 22nd 2020, with early check-in on Wednesday, November 18th. The event starts each day at 8am PST/11am EST and will include social events presented by the symposium's sponsors. The symposium is open to the public. For more information, visit https://www.sicklecellconvention.org, or call 706.204.9269.
About the Sickle Cell Community Consortium: The Sickle Cell Community Consortium is a US-based non-profit formed in 2014 to "harness and amplify the power of the patient voice". The Consortium is composed of sickle cell community-based organizations, community partners and medical/research advisers. For more information about the Consortium visit https://www.sicklecellconsortium.org.
Sickle Cell Community Consortium
525 Tribble Gap Road
Box 1195
Cumming, GA 30040
Phone: 706.204.9269
E-Mail: [email protected]
SOURCE Sickle Cell Community Consortium
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