Skip to main content
IDF logo
DNA helix illustration.

Congenital athymia

Congenital athymia is an ultra-rare condition in which children are born without a thymus, causing severe immunodeficiency and immune dysregulation.


Congenital athymia is an ultra-rare condition in which children are born without a thymus. The “T” in T cell stands for thymus because it is where T cells are selected to fight infections or are destroyed if they have the potential to attack the body instead of invaders. Without a thymus, children with congenital athymia may have profound immunodeficiency, vulnerability to potentially fatal infections, and life-threatening immune dysregulation. 

With only supportive care, children with congenital athymia typically die by age two or three. Congenital athymia is initially detected by T cell deficiency observed in newborn screening for SCID (severe combined immune deficiency), which is now required in all 50 U.S. states. SCID and congenital athymia are both primary immunodeficiency disorders, but they are distinct conditions. The estimated incidence of pediatric congenital athymia in the United States is 17 to 24 live births each year.

Read the latest research

You are not alone!

Find support from other members of the primary immunodeficiency (PI) community through various programs, including regional Get Connected Groups, our monthly web-based virtual caregivers support groups, and our one-on-one Peer Support program.


Products approved for congenital athymia in the U.S.


(Manufacturer: Sumitomo Pharma Co., Ltd. )

Allogeneic processed thymus tissue–agdc.
Approved to treat: Congenital athymia.

Report side effects/adverse reactions at 833-369-9868.

Thymus donation

Providers and thymus tissue donors can potentially save the lives of individuals who live with congenital athymia. Sometimes during pediatric heart surgery, surgeons may need to remove thymus tissue in order to do the surgery. That thymus tissue is normally discarded. This is where you can make a difference!


This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice.

Adapted from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition 
Copyright ©2019 by Immune Deficiency Foundation, USA