What we do
Welcome to Salivary Gland Cancer UK.
Salivary Gland Cancer UK is here to support those affected by rare Salivary Gland Cancers. Whether you're a patient, the carer of a patient, a family member or a friend, we are here to support you. Peer support and reliable information is what we'd like to provide.
Initially we're going to focus on Adenoid Cystic Carcinoma or 'ACC' as it's the most common of the Salivary Gland Cancers, but over time we want to expand to support all of the Salivary Gland Cancers.
For those of you that are researchers or clinicians, treating people with these rare diseases or looking for a 'cure' for these rare diseases, we are here to support you too. We want to build out a UK network which involves all of us, to collaborate, to push forward for the best outcomes for patients.
If you'd like to volunteer your time, your expertise, your experience or even a few pennies to our cause, we'd like to hear from you.
As a network we have in person meetings a couple of times a year currently, although we may expand and we have them in different areas of the UK. We want to meet in person as many patients and carers as is possible, so we move around to allow people who don't want to, or can't travel that far to come along.
Having a network that is a collaboration between patients, their advocates and supporters on one side and clinicians on the other, bringing those two together provides a unique platform for patients and their carers to be involved in clinical trials. It also allows patients to know when these trials are opening, what might be relevant for them, to really feel part of the process, to feel empowered, to feel they are doing something to push forward research into their disease.
Another way you can get involved from a patient perspective is by providing tissue for the biobank at The Christie Hospital in Manchester. This will help drive forward research into your cancer and hopefully trials in the future for a 'cure'.
Any support that you can provide is valued very highly, not only by the network, but by all of it's members, all of the people that support it's members, all of the people that work with it's members and all the people that will be it's members in the future.
'Setting up a charity for an “orphan” cancer' our story published in The BMJ
Setting up a charity for an “orphan” cancer
Emma speaking at the 2020 International Head & Neck Cancer Conference
Emma talks about how Salivary Gland Cancer UK came to be, the importance of collaboration and how we use it to push forward research, provide reliable support and information, and better outcomes for patients.
Poster presented at Rarefest 2020
The poster can be viewed here
Emma presenting at the Beacon Cambridge Rare Disease Showcase 2022
Meeting the unmet need for rare Salivary Gland Cancers in the UK and beyond
You can hear the 5 (ish) minute talk here: (215) CRDS22 LT: Meeting the unmet need for rare Salivary Gland Cancers in the UK and beyond - YouTube