Sickle Cell Advocacy Group Hosting "Conversations"
ATLANTA, Aug. 20, 2021 /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 8th Annual Sickle Cell Warriors Convention 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 "Stronger Together: Warriors Are Resilient". This is the only conference organized entirely by "Warriors" (individuals living with sickle cell disease), and their caregivers. The event sponsors are Vertex (title), BlueBird Bio, Agios, Chiesi, Novartis, Fulcrum, Sanofi Genzyme, Pfizer, Global Blood Therapeutics and more. Educational sessions are geared towards both adult and child patients and caregivers. Activities will include Paint & Chat, a Murder Mystery, healthy cooking demonstrations, and more.
"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 exceedingly excited about 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 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 "8th Annual Sickle Cell Warriors Convention" will be held August 25th through August 29th, 2021, with early check-in on Wednesday, August 25th. 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. For media inquiries, contact Sharonda Sikes 469-213-8025
SOURCE Sickle Cell Consortium
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