Loading Events

« All Events

  • This event has passed.

Desmoid Fibromatosis Patient Conference

March 7, 2020 @ 9:30 am - 5:00 pm

Cambridge Rare Disease Network - Desmoid Fibromatosis Patient Conference 1
8 / 100
The Desmoid Fibromatosis Patient Conference promises to be an informative & educational day for all.

This event, the very first, for U.K based Desmoid type fibromatosis patients, promises to be an informative and educational day for all.

The day will offer patients a rare oppurtunity to meet and network with fellow patients & carers, while also having the oppurtunity to learn and educate themselves via some of the top names in Desmoid Tumour’s.

For many this will be the first time meeting a fellow patient face to face, something we feel is very important in breaking the isolation of this rare disease. Due the packed agenda planned we will have an hour dedicated to patient networking at the end of the day. This will likely fill the 4 – 5pm slot.

Our main speaker on the day will be Dr Palma Dileo, based at UCLH London. Dr Dileo will be presenting a past/present/future of desmoid’s. This promises to be an informative and enlightening presentation due to the sheer lack of knowledge among patients & carers at present, caused mainly by a lack of information available to them!

Dr Dileo shows a clear passion for her work with desmoid patients and attends many events & conferences each year to keep up to date and informed on what’s happening across the world for Desmoid Fibromatosis patients. She also works closely with the Desmoid Tumour Research Foundation among other organisations.

Also speaking on the day will be oncology physiotherapist Lucy Dean from The Royal Marsden, London. Lucy works closely with the fibromatosis clinic set up at the Royal Marsden earlier this year. She will be sharing information about the new clinic and explaing some of what goes on there.

Other speakers on the day will also include

A surgeon, pain management consultant, researcher and macmillan benifits advisor.

We will release full deatils of these and the agenda nearer the time.

There will also be information stands displaying information and offering advice during breaks.

Sarcoma UK & Genetic Alliance UK will be among these stands. We also hope to have a prosthetic stand too. Again more details of stands will be available as we confirm them.

This day will mark a monumental moment for DF patients here in the U.K, who, until now, have felt very alone and isolated with this extremely rare & incurable diagnosis of a Desmoid Tumour. Our hope is that this will be the first of many events aimed at supporting patients and carers. Enabling them to learn how to live with and beyond their diagnosis of Desmoid type Fibromatosis tumour.

Patients can follow updates via our facebook support group Desmoid United UK.


Radisson Blu Hotel, East Midlands Airport
Herald Way
Derby, England DE74 2TZ United Kingdom
+ Google Map