Join us in urging health care leaders to expand access to 22q11.2 deletion syndrome screening. The condition, also known as 22q, is often underdiagnosed and can present with a range of health challenges that impact children. By signing this petition, you're not only advocating for critical early detection and intervention but also standing up for a brighter future for families impacted by 22q. Together, we can ensure that every family has the opportunity to make the most informed decisions and best preparations for their child.
Sign the petition today!
Dear Drs. Zahn and Hicks,
On behalf of all the concerned mothers and fathers who have signed below, we strongly urge the American College of Obstetricians and Gynecologists (ACOG) to update its guidelines to recommend 22q11.2 deletion syndrome screening for all pregnancies. Without this endorsement, many families will be left without access to this early detection, and along with it, critical early medical and developmental interventions that can significantly improve a child's health outcomes.
More commonly known as 22q, the most common cause of DiGeorge syndrome, 22q11.2 deletion syndrome is a leading genetic cause of multiple birth defects and medical problems across the lifespan. 22q has historically been underdiagnosed despite occurring in approximately 1 in 1,000 pregnancies, 1 in 1,500 miscarriages, and 1 in 2,000 children. 22q is
more common than some other genetic conditions like cystic fibrosis (CF) and spinal muscular atrophy (SMA) which are already recommended by ACOG for universal screening.
Early detection of 22q during pregnancy allows families the critical opportunity to deliver their child in a neonatal care center best equipped to offer comprehensive evaluations and appropriate interventions prior to birth hospital discharge. Screening for 22q can help families avoid a lengthy search for answers, which can take up to 5 years on average.
Without an official recommendation from ACOG, many families who could benefit from this valuable opportunity for prenatal screening may be blocked by insurance companies or even their physicians.
No family deserves being denied the opportunity to make the most informed decisions and best preparations for their child. Non-invasive prenatal screening for 22q11.2 deletion syndrome must be available for all.