On August 18th, 2021, Sick Cells hosted a multi-stakeholder roundtable discussion with individuals from the Hispanic community who live with SCD or care for loved ones with SCD. The goal of the roundtable was to understand SCD within the Hispanic community, identify key educational gaps, and create targeted educational tools to fill those gaps. This report is summary of our findings.
On August 18th, 2021, Sick Cells hosted a multi-stakeholder roundtable discussion with individuals from the Hispanic community who live with SCD or care for loved ones with SCD. The goal of the roundtable was to understand SCD within the Hispanic community, identify key educational gaps, and create targeted educational tools to fill those gaps. This report is summary of our findings.
Sick Cells partnered with the Caregiver Action Network (CAN) to strengthen their Caregiver Help Desk to serve the sickle cell disease (SCD) community. This report explains our findings and outputs from this work.
This toolkit provides resources to assist mentees and mentors in making the most of the mentoring relationship.
Use this worksheet as a guide for preparing your story to share with legislators.
Meeting with your legislator? Don’t go empty-handed! Sick Cells has developed this legislative one-pager to help you advocate!
This toolkit provides tips for virtual meetings with legislators.
Sick Cells hosted a first-of-its-kind multi-stakeholder summit to discuss the changing landscape of healthcare coverage for sickle cell disease (SCD), called The Coverage for SCD Summit. This report contains proceedings and recommendations from this summit, which are intended to inform next steps to drive collaborative efforts and address gaps in access and coverage for SCD treatments.
Since 2019, Sick Cells has worked to highlight the patient voice in coverage decision meetings by training advocates to share their story. To date, Sick Cells has trained over 25 individuals to advocate for sickle cell disease coverage in their state. This paper outlines the process Sick Cells follows to ensure the patient voice is reflected and prioritized in Medicaid coverage decisions across the country, and reviews current barriers and potential solutions to improve stakeholder engagement at these committee meetings.
The Centers for Disease Control and Prevention ( CDC) released the Steps to Better Health Toolkit to help individuals living with SCD manage their health. This collection of tools and resources provides evidence-based guidance on caring for common complications experienced by individuals living with SCD.
Authors Yasmeen Long and Esther Krofah of FasterCures at The Miliken Institute have written an action plan to address diversity across clinical trials and biomedical research.
This guide helps sickle cell warriors bring intentionality to their diet & nutrition in order to help support the body in its healing
