Sickle Cell Warriors Convention Open to Patients, Families Aug. 25-29
The Sickle Cell Consortium, a U.S.-based nonprofit, is hosting a virtual event in late August that will focus on facilitating conversations among people with sickle cell disease (SCD) and their caregivers.
“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,” Lakiea Bailey, PhD, who leads the consortium, said in a press release.
Check-in for the group’s 8th Annual Sickle Cell Warriors Convention starts on Wednesday, Aug. 25, and the event runs through Sunday, Aug. 29. The convention is open to the public, and registration is available online. This year, the $25 participation fee is being waved for all SCD patients and caregivers.
“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,” said Bailey, a research scientist who was diagnosed with SCD at age 3.
“We’ve planned a number of fun activities this year, along with the vital information SCD patients count on us to provide,” Bailey said.
The event will begin at 11 a.m. ET each day except Sunday, which starts at noon ET. Activities will include paint-and-chat, a murder mystery, healthy cooking demonstrations, and social events presented by the symposium’s sponsors. There also will be educational sessions for patients and caregivers of all ages, including adults and children.
The event will also offer opportunities to discuss issues that affect people with SCD, such as challenges brought on by the COVID-19 pandemic, and difficulties in seeking treatment for pain management in the context of the opioid epidemic.
“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,” Bailey said.
The convention is being sponsored by a number of pharmaceutical companies, including Vertex, BlueBird Bio, Agios, Chiesi, Novartis, Fulcrum Therapeutics, Sanofi Genzyme, Pfizer, and Global Blood Therapeutics.
“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 [community-based organizations] and the sickle cell community-at-large engaged and informed,” said Sharonda Sikes, the consortium’s director of operations.