The Parent to Parent Initiative, powered by the Sickle Cell Community Consortium, is a unified platform of parents and caregivers focused on building connections, increasing access to education and resources, and promoting advocacy through a national parent to parent network of families living with sickle cell.
PROJECT MANAGER: Lisa Rose, Hope for SCD | For questions on P2P or any other project or initiative with the Sickle Cell Consortium, contact Alexis Wardlow-Perry at awardlow@siclecellconsortium.org.
CONNECTION:
Connecting parents regardless of geographical boundaries. Goals to increase our support network
- Create a safe space for parents to discuss sensitive issues related to sickle cell outside of parent/patient forum
ADVOCACY:
Advocating for sickle cell both locally and nationally. Goals to increase our presence
- Mobilize a parent task force to create political change within the rare disease and sickle cell arena at the local and national level.
RESOURCES:
Equipping families with necessary tools. Goals to increase access to required tools
- Develop a National Sickle Cell and School policy document for use in elementary, secondary, and higher education institutions
EDUCATION:
Educating families with research-based materials. Goals to increase accurate, research-based materials
- Design and Implement Warrior Parent University, an online platform utilizing webinars for parents that presents relevant topics identified by the P2P network
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