TRPS Support Group UK – support for Trichorhinophalangeal Syndrome

Welcome to the TRPS Support Group UK Website

TRPS Support Group UK provides sympathetic support to those with trichorhinophalangeal syndrome and their families.

We are a small, not-for-profit organisation run by our members who all live daily with the effects of TRPS.

Our main aims are:

  • Helping others who may be without support or information about the condition
  • Giving reassurance to others through our own experience
  • Raising awareness of TRPS amongst the medical profession and the general public

Trichorhinophalangeal syndrome is a rare genetic condition affecting the hair (tricho), nose (rhino), and fingers (phalangeal). The term is often abbreviated to TRPS. There are two main types: Type 1 (or TRPS1) and Type 2 (or TRPS2, sometimes also called Langer-Giedion syndrome, named after the two radiologists who described the first patients). The most common problems are short stature, sparse hair, and restricted joint movements. People with TRPS type 2 can also develop benign bony tumours (or lumps) that grow on the bones or may suffer learning difficulties.

Here are some useful documents with more information about the condition:

Here are some links to other websites that may be useful:

Please visit our Facebook group to chat with individuals with TRPS and their families.

You may also be interested in visiting these other Facebook groups:

The forum which used to be on this page is now closed; please use the Facebook group.