Purpose
Mission: To improve the quality of life, life expectancy, and health among those living with SCD
Communications Corner
- CA Sob体育 released its Summer 2024 semi-annual .
- MI Sob体育 developed the policy memo "."
- MI Sob体育 developed a for its recent publication about telehealth use rates among individuals with sickle cell disease (SCD) in four states during the COVID-19 pandemic.
In the Community
- A using Sob体育 data aims to streamline the collection of information on individuals living with SCD.
- CA Sob体育 hosted two webinars in May and July 2024: and .
- NC Sob体育 hosted the 12th Annual UNC/Duke Sickle Cell Disease Conference: Transformative Therapy for Sickle Cell, a Deeper Look on Friday, September 6, 2024.
Spotlight: Jessica Jimenez Rico, Wisconsin Sob体育 Community Outreach Workgroup Coordinator
What is your full-time job/role and what do you do?
My full-time role is multifaceted. As the communications lead and community outreach coordinator for WI Sob体育, I lead communication efforts for WI Sob体育. In my role as a clinical research assistant, I work with both pediatric and adult individuals, with and without SCD, across longitudinal studies.
What is your hope for SCD?
My hope for SCD is all-encompassing. I envision a future where equitable access to comprehensive care is a reality for every individual living with SCD, regardless of their background, location, or income. I hope to see increased awareness and activism that not only breaks down the stigma but also mobilizes communities and policymakers to take meaningful action. I'm optimistic that we'll see more policies that support the SCD community, ensuring they receive the resources and attention they deserve. I also hope for a surge in SCD-specific clinical research that not only advances treatments but ultimately leads to a cure—one that is accessible to everyone, leaving no one behind.
Up-to-Data
- CA Sob体育 provided data to UC San Diego's Adult Sickle Cell Clinic. The data were used to identify nearby primary care clinics and to highlight the importance of increasing outreach to improve access to primary care for individuals with SCD.
- NC Sob体育 completed a data request from clinicians at Atrium Health to understand the occurrence of cancer among people with SCD in NC.
Presentations
Between May and August 2024, Sob体育 states delivered presentations at two conferences/meetings.
National Heart Lung and Blood Institute’s 2024 Annual Sickle Cell Disease Research Meeting, August 12–14, 2024
- Public Health Opportunities to Improve Pediatric Sickle Cell Disease Care (Mary Hulihan, ob体育 Sob体育)
- Birth Prevalence of Sickle Cell Disease and County Level Social Vulnerability (Mariam Kayle, NC Sob体育)
- Medicaid Coverage and Pediatric Quality Measures for Children with Sickle Cell Disease (Sophia Horiuchi, CA Sob体育)
- Opioid Use after First Prescription in Children with Sickle Cell Disease (Angie Snyder, GA Sob体育)
Family Medicine Residency Curriculum Didactics, May 29, 2024
- WI SCD Clinical Significance, WI Specific Data and Sob体育 Initiatives (Melissa Azul and Ashima Singh, WI Sob体育)
Announcements
Learn how Sob体育 helps inform policy decisions and resource allocation within states to improve and extend the lives of people with SCD. Sob体育 programs will showcase their work and highlight how their data are being translated into action.
Contact
For any questions about the Sob体育 program, contact Mary Hulihan ([email protected]) or Juliet Morales ([email protected]).