They are pursuing research on cartilage disease which is a major component of Ollier disease and Maffucci syndrome, and at present they are doing a number of different studies.
Although it is early days they are trying to develop a biomarker to monitor the progress of Ollier disease / Maffucci disease by looking for markers in the blood and urine - and this is the reason they are collecting these samples. With these conditions being so rare, collecting samples is useful because it can take years to collect samples in any significant number.
Patients samples are always useful, so if you are ever having a blood test, it would be useful to take a few extra mld of blood for research and at the same time (more or less) take a urine sample. Also if for any reason you are having surgery in the future - it would also be useful to let them know. ***But it would not be appropriate to take a blood sample unless it was being taken for medical treatment.
You can always contact the hospital direct and Professor Flanagan who is carrying out the research or through our contact us page on this website and we can advise how to get in touch.
There are forms to complete and they can organise for the samples to be collected.
They are also working to study compounds / drugs that may be useful in treating the disease - this is at an early stage.
To keep updated on all research you can visit the London Sarcoma Service (LSS website)
If you wish to do any fund raising - this would be gratefully received. Funds can go through SCAT, Bone Cancer Trust -
This can be sent to stating that it should go towards Maffucci Syndrome and Ollier Disease - cartilage tumour research.
Please use our contact us on this webpage and we can provide more details on this for you to get in touch with them directly.