During Sickle Cell Awareness Month, NMPD/Be The Match reminds individuals to visit SickleCellConnect.com to access essential resources, learn more about Sickle Cell Disease, and join the Be The Match Registry.
(Minneapolis, MN) — August 31, 2023 — Committed to accelerating progress and expanding access to curative treatment, the National Marrow Donor Program® (NMDP)/Be The Match® is encouraging sickle cell warriors and caregivers to turn to Sickle Cell Warrior Program for free resources, support and for others to join the Be The Match® Registry to potentially save a life.
“Sickle cell is the most common inherited blood disorder in the U.S. affecting over 100,000 people of all ages. While a bone marrow transplant is a curative treatment, not enough of patients have awareness of this option, access to resources or a donor to receive a transplant,” said Amy Ronneberg, Chief Executive Officer, NMDP/Be The Match. “We offer hope to sickle cell warriors by working to expand access to treatment as well as support from patient navigators who offer guidance on a patient’s options, including financial grants, early referral, clinical trials and HLA typing. With this holistic programming and our efforts to increase the number of diverse donors, we are confident we can offer more sickle cell warriors the support they need to receive the best possible treatment options.”
Transplant as a Curative Treatment
A blood stem cell or marrow transplant is the only established cure for SCD, underscoring the need for donors to join the Be The Match Registry. As a member of the Be The Match Registry, individuals join a unique team of potential blood stem cell donors who can save a life if matched with someone in need. Every individual who signs up increases the potential matches for sickle cell warriors and others blood disorders for which a bone marrow transplant can be a curative treatment. NMDP/Be The Match has facilitated approximately 3,500 SCD transplants to date, with 83% coming from a related donor and 17% from a donor on the registry.
The Sickle Cell Warrior Program
The free Sickle Cell Warrior Program aims to increase access to treatment through patient education, navigation, financial assistance, peer connections, and research. A dedicated website, SickleCellConnect.com, serves as a resource hub for patients that includes warrior stories, education from providers, information on counseling, a clinical trial search tool, and free Warrior Packages. This ground-breaking program reached 5X as many individuals in the past year and awarded 16 fertility preservation grants to SCD warriors pursuing stem cell transplant. Be the Match wants to support and empower patients and their families throughout an individual’s treatment journey. Sickle Cell Warriors can learn more about transplant and resources available by ordering a free Warrior Package that includes handouts, an appointment journal, resources, and tools.
“Our mission is to create a world where every patient, including sickle cell warriors, can receive their life-saving cell therapy, said Dr. Jeffery Auletta, Senior Vice President, Patient Outcomes and Experience, NMDP/Be The Match and Chief Scientific Director, CIBMTR® (Center for International Blood and Marrow Transplant Research®)/ NMDP/Be The Match. “We know that sickle cell warriors face unique challenges and barriers to care, and we intend to do everything we can to remove them with sustainable solutions. As a world-class partner to the sickle cell community, we strive to accelerate progress through research with industry partners while working closely with community-based organizations and physicians.”
NMDP/Be The Match, a global research leader, and the CIBMTR® (Center for International Blood and Marrow Transplant Research®) completed vital research on SCD, including A Qualitative Analysis of State Medicaid Coverage Benefits for Allogeneic Hematopoietic Cell Transplantation (alloHCT) for Patients with Sickle Cell Disease (SCD) and Long-Term Survival After Hematopoietic Cell Transplant for Sickle Cell Disease Compared to the United States Population.. NMDP/Be The Match continues to help sickle cell disease patients find and join clinical trials for additional treatment options.
SCD Fertility Preservation Grant
With funding provided by the Be The Match Foundation®, NMDP/Be The Match and their partner Sickle Cell Reproductive Health Education Directive (SC RED) can provide financial help for SCD warriors who want the opportunity to build their own families post-transplant. The grant provides a limited number of qualified patients with up to $10,000 to help preserve fertility before transplant. For information, contact patientgrants@nmdp.org or (763) 406-8114.
National Marrow Donor Program® (NMDP)/Be The Match®:
The National Marrow Donor Program® (NMDP)/Be The Match® is the leading global partner working to save lives through cellular therapy. With 35 years of experience managing the most diverse registry of potential unrelated blood stem cell donors and cord blood units in the world, NMDP/Be The Match is a proven partner in providing cures to patients with life-threatening blood and marrow cancers and diseases. Through their global network, they connect centers and patients to their best cell therapy option—from blood stem cell transplant to a next-generation therapy—and collaborate with cell and gene therapy companies to support therapy development and delivery through Be The Match BioTherapies®. NMDP/Be The Match is a tireless advocate for the cell therapy community, working with hematologists/oncologists to remove barriers to consultation and treatment, and supporting patients through no-cost programs to eliminate non-medical obstacles to cell therapy. In addition, they are a global leader in research through the CIBMTR® (Center for International Blood and Marrow Transplant Research®)—a collaboration with Medical College of Wisconsin, investing in and managing research studies that improve patient outcomes and advance the future of care.
