Learn The BasicsFetal and neonatal alloimmune thrombocytopenia (FNAIT) is a rare disease that can have devastating effects on the lives of women, their babies and their families.
FNAIT can cause thrombocytopenia or very low platelet counts, increasing the risk of heavy bleeding, which can have very severe consequences such as lifelong neurological issues or even death.
There are several associations and organizations that provide support, resources and community for families affected by FNAIT.
Naitbabies
Naitbabies is a small charitable incorporated organization registered in the U.K. in 2011. It is run by families who have been diagnosed with FNAIT.
The mission of Naitbabies is to be a voice for parents, children and families who have been diagnosed with FNAIT, or who are suspected of having FNAIT.
Their objectives are to provide support, advocacy and practical assistance. It also seeks to provide funds to support FNAIT research and to advance the education of the public and those involved in the diagnosis, treatment and care of those affected by FNAIT.
Allo Hope Foundation
The Allo Hope Foundation was founded in 2019. It aims to meet the needs of people affected by hemolytic disease of the fetus and newborn (HDFN) and other alloimmune conditions such as FNAIT to provide the information and support that they need.
Their mission is to prevent harm, stillbirth or infant death caused by alloimmunization.
The Allo Hope Foundation is the longest-running non-profit organization that offers resources and support specifically for alloimmunized women.
Society for Maternal Fetal Medicine
The Society for Maternal Fetal Medicine is a non-profit organization dedicated to improving outcomes for mothers and children.
Founded in 1977, it provides prenatal testing, state-of-the-art imaging and cutting-edge treatment for a wide variety of pregnancy-associated complications and conditions, including FNAIT.
Canadian Blood Services
Canadian Blood Services is an independent, not-for-profit charitable organization established in 1998 that works to ensure patients have safe, reliable access to the high-quality blood, plasma, stem cells, organs and tissues they need.
The Canadian Blood Services webpage includes a section dedicated to FNAIT, with information about diagnosis and disease management.
The National Platelet Immunology Reference Laboratory (NPIRL) of the Canadian Blood Services conducts the following tests for newborn babies with low platelets counts suspected of having FNAIT: maternal antibody screening against HPA (the most common protein that triggers an immune response in the mother during pregnancy), genetic testing for HPA and an MAIPA assay to detect and identify platelet antibodies.
The management section of the website contains information on antenatal treatment, including intrauterine platelet transfusion and intravenous immunoglobulin (IVIG) as well as on postnatal treatment such as platelet transfusion, supportive care and corticosteroids.
The International Collaboration for Transfusion Medicine Guidelines (ICTMG)
The ICTMG is an independent collaborative of volunteers with expertise in transfusion medicine and related clinical disciplines.
The mission of ICTMG is to conduct and disseminate evidence-based practice guidelines through international collaboration to optimize patient outcomes.
ICTMG developed a guide for FNAIT that includes guidance on the antenatal and postnatal management of FNAIT for hematologists, maternal fetal medicine specialists, immunologists, transfusion medicine specialists, pediatricians and neonatologists.
They also provide additional resources for patients, including a podcast that includes questions and answers about FNAIT and patient pamphlets about the disease in many languages including English, French, Italian, German, Japanese, Portuguese and Spanish.
