San Jose, California--(Newsfile Corp. - February 1, 2023) - Sickle Cell 101, a non-profit organization, is using an innovative approach of digital advocacy to provide education and patient focused research for sickle cell.
With a community that reaches millions on social media spread across 115 countries, Sickle Cell 101 has made a significant impact in promoting awareness of both sickle cell disease and sickle cell trait at the grassroots level through their digital platform, rich in educational and research resources.
The digital materials produced by the non-profit are in the form of social media posts, podcasts, videos, and blog articles that highlight key information and resources on important sickle cell-related topics. This community-led educational material targets primarily patients and their families but also other stakeholders such as healthcare providers, researchers and allies of the global sickle cell community. Sickle Cell 101 takes complex evidence-based information and simplifies it making it accessible to broader audiences.
"Our goal at Sickle Cell 101 is to function as a global platform to educate, engage, and empower an underserved community," says Cassandra Trimnell, Founder and Executive Director of Sickle Cell 101.
In the disease, red blood cells are crescent shaped and impact blood flow to tissues and vital organs. This presents with a myriad of complications like pain, stroke, infections, among many others. It is the oldest described molecular disorder and though it was discovered back in 1910 in Western medicine, so far only 4 FDA approved drug therapies are available to sickle cell patients in the U.S. There has been great progress in research and treatment options for other rare diseases, like cystic fibrosis, deservingly so, however this has not been the case for sickle cell disease. Sickle Cell 101 continues to seek and transform the outlook and experiences for individuals living with sickle cell disease through education and empowerment and spurring research in this area.
"Sickle cell disease affects primarily people of color, most predominantly those of black/African descent. This comes with its own implications including historically low funding, research and limited treatment options for a global health issue that affects millions," says Trimnell. One way Sickle Cell 101 has addressed issues surrounding limited research is by developing Sickle Cell Studies, the first and only patient-driven, web-based resource that helps patient communities, healthcare professionals and researchers identify clinical trials and research opportunities for sickle cell globally. "Sickle Cell 101 is constantly advocating for more research and funding to improve treatment/curative options for this often neglected disease. We are involved in several research studies with various universities and hospitals that aim at addressing sickle cell complications and health disparities for our community. This is very personal for all of us, so our goal is to do our part to move sickle cell research forward and to provide programs that drive action. We're a team that is comprised of people who live it and people who get it. This is why it's important to us that everything for the sickle cell community is led by the sickle cell community," concludes Dr. Stephen Boateng, Director of Data Insights and Scientific Collaborations.
About Sickle Cell 101:
Sickle Cell 101 is a nonprofit organization that connects, educates and empowers the worldwide sickle cell community through targeted digital engagement and data-driven initiatives. As the largest global digital patient organization that specializes in sickle cell disease and sickle cell trait education, it strives to advocate for improved funding for research and health equity for the global sickle cell community.
Name: Cassandra Trimnell
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