TOFS supports people born with the rare congenital malformations OA and TOF, which affect the oesophagus (food-tube, or gullet) and / or trachea (windpipe) of about one in every 3,500 babies.

Before the first successful surgery (1941), OA/TOF babies simply died. Nowadays, survival rates are high: but the neonatal surgery is a treatment, not a complete cure. Patients often suffer from a range of obscure, poorly understood complaints, sometimes for life.

TOFS offers (otherwise) hard-to-get information about living with the condition, as well as friendship, and other support:

  • Personal / online support from other parents who have an older OA/TOF child; support too from other Adults who were born with the condition
  • presentations from leading healthcare experts at annual conference or on Zoom
  • a newsletter and website, packed with information, including videos
    information leaflets, books, and many other resources

TOFS engages with leading healthcare professionals and with medical research, in order to encourage continuing improvements in treatments for OA. Our vision is to enable those born with OA/TOF to live long and healthy lives unconstrained by the impact of these conditions.

TOFS is UK-based and receives no public-sector support at all.

Past gifts in wills have given TOFS the confidence to spend more and make step-change improvements to the support we give (projects to publish our books, update TOFS’s website and develop an app).  TOFS wants to keep stepping forward and will be hugely helped by future gifts in wills.