supporting the families of children born unable to swallow

To all at TOFS, just a really big THANK YOU for being there. All I wanted was just for someone to listen and understand and you were there for me.

Jo Wright, parent of a child born with TOF/OA

VACTERL

See our page of support groups and families’ sites for more useful information.

You might find what you’re looking in our range of leaflets about VACTERL.

The Vater Forum
US VACTERL/VATER forum

VACTERL Network
US VACTERL/VATER forum

VATERS Association Family Network
US-based VACTERL/VATER support group

Vertebral

Scoliosis Association
The only independent support group for scoliosis in the UK

Scoliosis World
US site with information, resources and message boards.

iScoliosis
US site with resources and information.

Anal

Pull-thru network
One of the largest organisations in the world dedicated to the needs of those born with an anorectal malformation or colon disease and any of the associated diagnoses including: imperforate anus, cloaca, VACTERL, urinary incontinence, Hirschsprung’s Disease, spinal and renal anomalies.

Cardiac

Little Hearts Matter
Charity aimed at supporting families of children with a single ventricle heart condition. Source of information and direct support.

Heartline Association
For children with heart conditions and their families.

Children’s Heart Federation
Organisation made up of 22 registered charities which children with heart conditions, congenital or acquired heart disease and their families in the UK and Ireland.

Renal

National Kidney Foundation (UK)
UK charity run by kidney patients for kidney patients.

National Kidney Foundation (US)

LIMB

REACH
Charity providing support and advice for children with hand or arm deficiencies, and their parents.