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:
- A brief description of the Trichorhinophalangeal Syndromes
- Clinical Diagnostic Guidelines for TRPS
- A recent paper on TRPS published in 2015
- X-Rays showing the difference between normal bones and bones of someone with TRPS
- Slides from a talk given by Dan Wells in 2002 at an American TRPS Group
Here are some links to other websites that may be useful:
You may also be interested in visiting these other Facebook groups:
- TRPS Scandinavia
- TRPS Support Group Australia
- Syndrome Tricho Rhino Phalangien France
- Langer-Giedion Syndrome, AKA TRPS type II
The forum which used to be on this page is now closed; please use the Facebook group.