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Francis-Gibson said SCDAA is the nation’s only volunteer organization working full time on a national level to resolve issues surrounding sickle cell disease (SCD). “Our organization maintains a database of individuals and families with SCD; assists clients in inding quality care; and we educate other advocates, patients and families,†she said.
Francis-Gibson said that their organization realized that there were opportunities as a result of the pandemic that they could take advantage of. “When we had our virtual advocacy day [as a result of the pandemic] everyone was re-energized. We captured a broader audience as a result of the pandemic and reduced isolation for SCD patients.â€
Other realizations included the challenges of Zoom fatigue, mental health concerns, technology challenges and health disparities.
Opportunities for 2022 include continuing to work creatively and impactfully by streamlining meetings and increasing nimbleness by using various platforms to engage audiences.
Rodney Dickson, senior director, therapeutic policy and advocacy, rare disease, US public affairs, Takeda, introduced Laura Wingate, executive vice president of education, support and advocacy at Crohn’s & Colitis Foundation.
“Our mission is to cure Crohn’s disease and ulcerative colitis and improve the quality of life for children and adults affected by these diseases,†Wingate said. She agreed with Francis-Gibson in that during the pandemic they didn’t have the constraints of a live event. â–
