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:
- Hypermobility Syndrome Association
- Ectodermal Dysplasia Society
- Rare Disease UK
- Rare Chromosome Disorder Support Group
- Arthritis Care UK
- Alopecia UK
- Little Princess Trust - provides real hair wigs to children and young people with hair loss.
Facebook group 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:
- 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.