UK: Desmoid Fibromatosis UK Patients & Caregivers

Contact Information [Closed group]

Contact Person

Lisa Pascoe

Organisation Profile

Desmoid Fibromatosis Patients & Carers U.K ( DFPCUK ) is here to empower, support and educate patients through and beyond their diagnosis of a desmoid tumour. We currently have our facebook page to share information and up to date news on what’s happening in the fibromatosis community. We also advertise clinical trials, link to information and share news from the wider rare disease community here.
We have also launched our associated twitter account for this which can be found at dfpcuk1 on twitter.
Desmoid United UK is our closed facebook community where patients have a safe and secure environment to connect, share, exchange information and ultimately support one another through this rare and often isolating diagnosis.
We have organised a number of informal meet up’s for patients and carers in recent years in order to help break the isolation of living with this rare disease. On Sat 7th March 2020 we will have our very first UK patient conference at the Raddison Blu Hotel, East Midlands airport. This will be an educational and informative day offering patients the rare oppurtunity to network within the Desmoid UK patient community.
Eventbrite registration for this event can be found at the following link
In 2020 our aim is to launch our website and extra social media outlets in order to reach out to more patients at the beginning of their journey.
We hope 2020 will be the year we turn Desmoid Fibromatosis Patients & Carers UK from a small online community to an officially recognised organisation.

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