Allo Hope Foundation

The Allo Hope Foundation is the only known nonprofit organization that supports families facing maternal alloimmunization and HDFN. Our goal is to prevent harm, still birth and infant death cause by alloimmunization and HDFN (hemolytic disease of the fetus and newborn.) We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition. 

Maternal alloimmunization and HDFN affect women and babies around the world and can have devastating consequences for patients and their families. Since the disease is somewhat rare, 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. 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 feel isolated and scared as they try to understand what the implications of the disease are. Some women find themselves educating their doctors and bearing the responsibility of convincing the medical staff to provide the right tests, monitoring, and treatments. In low income countries many of the basic medical necessities such as anti-D prophylaxis (Rhogam), intrauterine blood transfusions and phototherapy lights are not available. Alloimmunization and HDFN also affect the patients’ families, causing anxiety and emotional stress during and after pregnancy, often limiting their choice to add children to their families in the future. It can also take a huge toll financially on the families dealing with the disease since the treatments can be very expensive and families often have to travel or relocate in order to find adequate medical care. Currently, the only known organization founded to offer resources and support to alloimmunized women and HDFN patients is the Allo Hope Foundation.

What brings us hope is 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.

What if every woman and every baby received the correct medical treatment? What if every alloimmunized pregnancy ended with a healthy baby? What if all parents had the ability to choose how many children they added to their families? What if alloimmunized women felt supported, empowered and encouraged during their high risk pregnancies? It is our hope that The Allo Hope Foundation will be able to accomplish these things.