The Allo Hope Foundation seeks to remove some of the fear and additional burdens through the creation of patient-facing materials. We regularly receive input from women in our support group and patient advisory boards for what they need to make their pregnancies easier. These materials educate patients about the disease, encourage women to be an active part of their care teams, and empower mothers to advocate for their babies.
To combat the issues associated with having and treating a rare pregnancy disease, we use our print resources to provide every healthcare provider and patient who contacts us with a copy of our medically reviewed point of care materials. To date we’ve provided over 400 prenatal booklets and over 400 newborn booklets to every fetal center in the US, midwives and OBGYNs in 2 countries, and to pregnant women around the globe. The response to our first batch of booklets has been incredible and as a result we are rapidly running out and needing to reprint additional copies.
We are so thankful that these materials have been well received. Women appreciate having ready access to information about their disease that is easy to understand and beautiful to look at.
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? Our printed materials provide a way for women to learn about their disease, the options out there, and what the future may look like. Our materials educate patients and providers about all of their options for family planning, and empower women to be partners in their prenatal care. The Allo Hope Foundation is changing the future for women and their children with this disease and we will continue to use our print materials to do so.
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Maternal alloimmunization occurs when a woman makes red blood cell antibodies as a result of foreign blood mixing. These antibodies can cross the placenta and attack the unborn child, a disease called hemolytic disease of the fetus and newborn (HDFN). Since alloimmunization and HDFN are rare diseases, many providers have limited experience treating HDFN and women who are facing a new diagnosis often have trouble finding accurate, up to date information on their disorder. As a result, many patients do not receive adequate monitoring or treatment during and after their pregnancies. Poorly managed pregnancies and neonatal care can result in anemia, brain damage, and even death, but it doesn’t have to be this way! With close monitoring and timely treatment, babies with HDFN have a very high survival rate.
Our mission is to prevent any harm, stillbirth or infant death caused by Alloimmunization 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. Currently, the only known 501(c)3 organization founded to offer resources and support geared specifically towards alloimmunized women and HDFN parents is the Allo Hope Foundation.
Parents often feel isolated and scared as they try to understand what the implications of the disease are, and the impact that it will have on their children. Some women find themselves educating their doctors and bearing the responsibility of convincing the medical staff to provide the right tests, monitoring, and treatments. The stresses of having a high-risk pregnancy and a baby in the NICU are very hard for families.
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