Learn The BasicsHemolytic disease of the fetus and newborn (HDFN) can have devastating effects on the lives of mothers and families if not treated properly.
To help, we’ve provided a list of relevant associations and groups that provide support for people affected by HDFN and a brief description of their missions and goals.
Allo Hope Foundation
The Allo Hope Foundation was founded in 2019 by a mother whose first baby died before birth due to HDFN. The foundation aims to meet the needs of people affected by HDFN globally and to provide the information and support that is needed by this patient community.
Their mission is to prevent harm, stillbirth or infant death caused by alloimmunization and HDFN.
They help women affected by the disease develop and share educational materials and promote disease awareness and advocacy. They also conduct patient-centered research initiatives to improve outcomes and launch international initiatives to provide care and preventative treatments to underserved countries.
The Allo Hope Foundation is the longest-running non-profit organization that offers resources and support specifically for alloimmunized women and HDFN patients.
Maternal Alloimmunization Foundation
This is a patient-run nonprofit organization serving the women and families affected by maternal alloimmunization and HDFN.
Their mission is to provide advocacy and support to women affected by maternal alloimmunization and HDFN with the aim of preventing stillbirth and neonatal mortality and morbidity caused by the disease.
Read more about resources that are available for women affected by HDFN
Maternal Alloimmunization Foundation also provides patient support through education and works towards improving healthcare practices for mothers experiencing alloimmunization and HDFN.
The Fetal Health Foundation
The Fetal Health Foundation is a non-profit organization formed to support families who receive a diagnosis of a fetal syndrome including HDFN.
The foundation, which was founded by the parent of twins who suffered from twin-to-twin transfusion syndrome, also funds research, works on increasing awareness about fetal syndrome and provides medical information about fetal syndromes.
The European Foundation for the Care of Newborn Infants (EFCNI)
The European Foundation for the Care of Newborn Infants (EFCNI) is the first organization across Europe that brings together parents, healthcare professionals and scientists with the common goal of improving the long-term health of preterm and newborn infants.
EFCNI aims to improve the situation of mothers and newborn infants in Europe across the full spectrum of care including preconception and maternal care, preterm and newborn infant care and follow-up and continuing care.
In partnership with Janssen, a subsidiary of Johnson & Johnson, one of the goals of EFCI is to raise awareness about rare alloimmune diseases such as HDFN.
Society for Maternal-Fetal Medicine
The Society for Maternal-Fetal Medicine is a nonprofit organization that is dedicated to improving maternal and child outcomes.
The society was founded in 1977 and provides prenatal testing, state-of-the-art imaging and cutting-edge treatment for a wide variety of pregnancy problems and conditions including HDFN.
Other organizations and resources
There are many other organizations that provide information about HDFN and its treatment. These include the National Institutes of Health, Medline Plus, The Australian Red Cross, Lifeblood, Canadian Blood Services and others.
Reviewed by Hasan Avcu, MD, on September 27, 2023
