Capture
Community

The rarity of Desmoplastic Small Round Cell Tumour means that many of those diagnosed won’t meet others with the same diagnosis in their local hospitals. Whilst some will travel to larger treatment centres we believe strongly that this is a diagnosis that no-one should face alone.

Whether you are a patient, a family member, a teacher, a palliative care nurse or an oncologist we have a community just for you. Our communities are a chance to connect to others in the same situation, a chance to raise questions with others who have walked the same path, a chance to celebrate the wins and a place to seek support when times are hard. Moderators are in place in order to ensure our communities remain welcoming spaces but on the whole groups are led by those within them. Our community support team aims to keep each group small enough that everyone gets to know each other and places people with others at similar stages in their journey to ensure maximum peer support.

Join the community

If you would like to join one of our WhatsApp communities or have questions about doing so please either call or text our support line on +44 7305 190656 or email vicky@captureDSRCTC.co.uk – once we’ve got to know you a little better by asking a few simple questions we’ll send you a link to join. We know it can be hard to take the first step, but we’re really looking forward to meeting you!

Events

Because we know that online isn’t the answer for everyone we’re also in the process of arranging in person family support within the UK. If you would liked to know more details as plans evolve or would like to register your interest, please do drop us an email at vicky@captureDSRCTC.co.uk so we can keep you updated.

Campaigning

Desmoplastic Small Round Cell Tumour currently receives no dedicated funding from governments, large pharmaceutical companies or the large cancer charities. We need your help to raise its profile. We would love you to write to your government representative to bring their attention to DSRCT, its survival rates and the lack of funding surrounding it.