Sickle cell disease (SCD) has often been called the “ultimate orphan disease” in the United States. The hemoglobin disorder affects nearly 100,000 people, yet in the 100 years since its discovery, there has only been one U.S. Food and Drug Administration–approved drug. Recent advances in treatment have shown that hematopoietic cell transplantation (HCT) offers a possible cure.
Yet, this therapeutic modality is significantly underutilized and lack of access to patient-centered HCT information remains a major barrier.
This session aims to increase awareness and application among hematology nurses of community engagement best practices. An innovative community engagement model between the National Marrow Donor Program (NMDP), Be The Match, and the Sickle Cell Disease Association of America (SCDAA) will be shared.
Building authentic partnerships and community engagement that is respectful and mutually beneficial with underserved communities takes time and commitment, and contributes to improved patient outcomes. Nurses, as trusted care providers, serve important roles in the partnership and community engagement process.
- Concurrent Session
- General Level
- Stem Cell Transplant
- CPHON ILNA: Disease Related Biology
- CPHON ILNA: Treatment
- CPHON ILNA: Professional Performance
- BMTCN ILNA: Basic Concepts and Indications for Transplantation
- BMTCN ILNA: Types of Transplants and Sources of Stem Cells
- BMTCN ILNA: Professional Practice
- Creating a Pediatric Hematology/Oncology Manuscript to Submit for Publication in a Nursing Journal (003)
- Opening Keynote: Never Ever Give Up! (101)
- General Session: Oral Medicine for Pediatric Hematology/Oncology Nursing (102)
- It's All GREEK To Me! The NEPENTHE Trial for Relapsed/Refractory Neuroblastoma; Personalized Molecularly Targeted Treatment (200)
- A Sustainable Community Engagement Program Model to Address Hematopoietic Cell Transplantation Education Needs for Patients with Sickle Cell Disease (201)