Thankful for the oneSCDvoice Working Groups

Thankful for the oneSCDvoice Working Groups I first remember learning about sickle cell disease in high school biology in the chapters on blood cells. I recall the lesson on the sickle-shaped red blood cells being sticky and not being able to flow through the body, but I had no idea what this meant to people who live with or care for someone with sickle cell disease. I came to work for rareLife solutions in July of 2017 while oneSCDvoice was in development. The potential members of the Working Groups were being identified at this stage and so began my introduction to the vibrant sickle cell community. As the Working Groups came together and began to review the progress and provide feedback on the oneSCDvoice platform in its infant stage, I started to gain more of an understanding of what it means to live with sickle cell disease. The Working Groups are made up of advocates of the sickle cell disease community who have sickle cell disease or care for someone with sickle disease or treat sickle cell disease. Each Working Group member has a unique point of view and expertise in sickle cell disease developed through their unique life experiences. Their expertise, passion, and unique perspectives helped to shape the oneSCDvoice platform and they continue to inject new life and ideas into the platform and grow the oneSCDvoice community. There are times when the Working Group members are meeting with us from 8pm–10pm to accommodate their busy schedules. Sometimes they are calling us with feedback from their hospital rooms during a pain crisis. One of our Working Group members, Shakir Cannon, passed away a few days before the launch of oneSCDvoice. I have learned from these people what it means to be dedicated, to advocate for a cause, and to live and thrive with pain. I am thankful for the opportunity to work with these people and to learn from them. oneSCDvoice is an education platform that gathers credible disease information and empowers people impacted by sickle cell disease. People can come to the platform to connect with people living with sickle cell disease and caregivers; to access high quality articles, videos, infographics, and more; and to learn about the clinical trial process and the legislation and policy process. With the launch of the Blog, the oneSCDvoice community members now have the opportunity to share their own stories and points of view. We encourage questions and feedback and want to ensure you that we are listening to the community. Please contact us with ideas or topics you would like to suggest we write about—or let us know if you would like to submit a blog for consideration. Please reach out to us at [email protected].   Sarah Staats Member, Community Engagement Team rareLife solutions