Maternal alloimmunization and HDFN affect women and babies around the world and have devastating consequences for patients and their families. Since the disease is rare and outcomes are variable, many providers have limited experience treating the disease and women who are facing a new diagnosis often have trouble finding accurate, up-to-date information on the disorder. As a result, many patients do not receive adequate monitoring or treatment during and after their pregnancies. Appropriate treatment for HDFN results in high likelihood of fetal survival. If improperly managed, HDFN can lead to significant fetal and neonatal morbidity and mortality from cardiac failure, effusions and ascites, a condition known as hydrops fetalis or fetal hydrops. Risk continues for affected infants after birth, especially those who do not receive the right medical care, since HDFN can lead to hyperbilirubinemia, kernicterus, anemia, brain damage and infant death.
Parents often experience feelings of isolation, guilt, and overwhelm when learning about their condition. Many families bear the weight of managing their own treatment plans and traveling great distances for high-quality care and intervention. In the absence of appropriate monitoring and treatments, families around the world suffer the loss of their child and experience unimaginable grief.
What find hope in knowing that alloimmunization and HDFN do not have to be a death sentence and they do not have to prevent alloimmunized women from growing their families. In fact, most cases, with effective monitoring and treatment, result in live birth and minimal long-term health effects for the child. The Allo Hope Foundation aims to ensure quality care for all alloimmunized women and their affected children.
The foundation was first dreamed of in 2018 by Bethany Weathersby. After her difficult pregnancies due to anti-Kell alloimmunization, Bethany created the Allo Hope Foundation. The Allo Hope Foundation is the longest-running 501(c)3 organization founded to offer resources and support geared specifically towards alloimmunized women and HDFN patients. Our mission is to prevent any harm, stillbirth or infant death caused by Alloimmunization (also called Isoimmunization) and Hemolytic Disease of the Fetus and Newborn (HDFN). We are dedicated to providing patient advocacy, support, and education while promoting research and improving healthcare practices for the condition.
The Allo Hope Foundation was officially founded and registered in August of 2019. We are a 501(c)(3) tax-exempt nonprofit. This means that all of your donations to us are tax-deductible.
The purpose of the Allo Hope Foundation’s website about alloimmunization is to promote broad consumer education, access to resources, and relevant literature. This website does not provide specific medical advice or recommendations for patients. Individuals should not rely on the information posted on this website as a substitution for speaking with qualified healthcare professionals. As in every case, your unique medical needs and conditions require a healthcare provider familiar with your situation. The Allo Hope Foundation strongly recommends that care and treatment related to alloimmunization and HDFN be made in consultation with your physicians who are familiar with your individual health situations. While the Allo Hope Foundation can provide resources and education about current standards of care and current medical literature, we can not be used as a substitute for qualified medical care.
The Allo Hope Foundation’s Board of Directors maintains the Foundation's financial accountability, and advises on strategic initiatives and long-term goals. All members of of our Board of Directors have the best interests of the Allo Hope Foundation at heart and agree fully with our mission to prevent stillbirth, neonatal death, and harm caused by maternal alloimmunization and HDFN.