Orlando, Fla., February 17, 2023 – A newly formed Alliance is bringing together leading transplant organizations to improve access to resources and support for people living with graft-versus-host disease (GVHD) and the GVHD community. This new alliance, the GVHD Alliance, also has designated February 17 as GVHD Day to elevate voices in support of people impacted by this condition. Current GVHD Alliance member organizations include American Society for Transplantation and Cellular Therapy (ASTCT), Be The Match-operated by the National Marrow Donor Program (NMDP), Blood & Marrow Transplant Information Network (BMT InfoNet), Meredith A. Cowden Foundation, and National Bone Marrow Transplant Link (nbmtLINK). The GVHD Alliance and GVHD Day are supported by Sanofi.
“GVHD has been part of my daily life for over two decades, so I know first-hand the impact this disease can bring to both patients and their families,” said Meredith Cowden of the Meredith A. Cowden Foundation. “This is an isolating and debilitating condition; raising awareness through the Alliance is one way to empower and connect this community with resources and assistance.”
GVHD has a consequential and far-reaching impact on allogeneic (meaning cells come from a donor) blood and marrow transplant recipients. While not all patients will develop GVHD, depending on the severity of the symptoms and the number of organs affected, the condition can impair a person’s ability to engage in usual daily activities and, in severe cases, be life-threatening.2
“NMDP is proud to work with the Alliance to reach patients with information they need to recognize and treat symptoms earlier. This collaboration will help connect patients to support groups, and access resources like social workers and patient navigators who can help them advocate for treatment, while addressing their fears and concerns,” said Jeffery Auletta, MD, Senior Vice President of Patient Outcomes and Experience, Be The Match and Chief Scientific Director, Center for International Blood and Marrow Transplant Research at NMDP. “Be The Match/NMDP brings a wealth of knowledge to these efforts based on our joint investigation with the transplant community of the safety and efficacy of GvHD prophylaxis regimens and treatments, and our initiatives to alleviate the psychosocial burden associated with a patient experiencing GvHD.”
The inaugural GVHD Day will be held on February 17, 2023, at The Tandem Meetings | Transplantation & Cellular Therapy Meetings of the American Society for Transplantation and Cellular Therapy (ASTCT) and the Center for International Blood and Marrow Transplant Research (CIBMTR) in Orlando, Florida, February 15-19, 2023.
“Ten years ago, we were limited in our ability to help GVHD patients. Thanks to increases in advocacy, research and funding, we’ve made advances that help this unique population,” said Corey Cutler, MD, MPH, FRCPC, Medical Director, Stem Cell Transplant Program, Dana-Farber Cancer Institute and Vice President, ASTCT. “When we unite on behalf of the GVHD community, our collective efforts can make an even bigger impact. That’s why we’re proud to be part of the GVHD Alliance and GVHD Day.”
GVHD creates many challenges which can adversely affect physical functioning, bodily pain, chronic fatigue, general health, vitality, and social functioning, among other things.2 Symptoms vary and can include a distinctive rash, persistent nausea, vomiting, change in skin texture and painful dry mouth and eyes.2,3
“There are significant barriers to reaching patients and caregivers with information about GVHD before, during, and after an allogeneic blood or marrow transplant,” said Susan Stewart, 33-year transplant survivor and Founder and Executive Director of BMT Infonet. “The Alliance website is a repository of timely, actionable information designed to help patients and their family members throughout their journey.”
People living with this condition can also face physical, functional, and psychosocial deficits that result in the inability to return to work or school and poor quality of life.2 These include, but are not limited to, fibrosis in organs, depression, anxiety, impaired vision, and more.4-9
“As the GVHD Alliance, our mission is to address the needs of people living with this condition,” said Peggy Burkhard, Executive Director of National Bone Marrow Transplant Link (nbmtLINK). “It can be overwhelming and frustrating for patients, as well as their caregivers and family. We want to better educate them and help them live their best lives.”
Learn more on the Alliance website, www.GVHDAlliance.org, a unified platform where the GVHD community can access a variety of educational resources and support tools.
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