The Young Adult Sickle Cell Alliance
The Young Adult Sickle Cell Alliance Advocate Advisors are trained professionals. The Young Adult Sickle Cell Alliance was created to be a voice of advocacy for merging and young adult patients living with sickle cell ages 16- 35. The Advocate Advisors joins the effort of the National Sickle Cell Disease Association of America, and other community organizations to strengthen the voice of united advocacy.
The Young Adult Sickle Cell Alliance are members of the National Sickle Cell Advocate Network (NSCAN). The NSCAN collectively joins patients, families, caregivers, and other stakeholder experts that partner with clinicians and researchers. NSCAN is a network developed by the National Sickle Cell Disease Association of America. Advisors are trained national advocates in support of research.
The Young Adult Sickle Cell Alliance (YASCA) was officially established March 2016 by Co- Founders Carla Lewis & Terri Booker.
A unique bond of fierce sickle cell warrior advocates Dominque Goodson, Elizabeth White & Cory Davis joined us as an active force to advocate for support to increase the quality of life for merging young adults and young adults.
We recognize the increasing mortality concern of young adults living with sickle cell disease. Preparation for transition of pediatric care to adult care is a experience very important to patients living with sickle cell disease. There are unique needs that need to be addressed for patients such as resources, connection to an adult hematologist, comprehensive care, support, connection to insurance, and much guided preparation to prepare for the adult world of the healthcare system.
Many young adults express getting no transition preparation, feeling mistreated, unprepared for challenges of care, and experiencing lack of resources in health system and beyond. The gap in services and quality care affects the quality of life for young adults.
After Advocates Carla Lewis & Terri Booker had conversation with fellow young adult advocates living with sickle cell in the community, they realize the community could benefit from an Alliance. The Young Adult Sickle Cell Alliance Advisor Team understands the disparities, unique needs and impact of sickle cell disease upon young adults, we identify that we are the united voice of the changes we would like to see to increase quality care, resources, treatments and needed support.
The Young Adults Sickle Cell Alliance joins forces with key stakeholders and advocates on a mission to further support merging young adults and young adults living with sickle cell disease.