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Welcome to Salivary Gland Cancer UK.
Salivary Gland Cancer UK is here to support those affected by, treating and researching rare Salivary Gland Cancers.
Whether you're a patient, the caregiver for a patient, a family member or a friend, we are here to support you. We provide peer support and reliable information for those affected by all 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. Our network and research working group involves all of us, to collaborate, to push forward for the best outcomes for patients.
We hold in person meetings at least a couple of times a year, attended by patients and clinicians alike, in different areas of the UK and via zoom. Our 'gatherings' are patient and caregiver focussed, open to all and we have a bursary scheme to help anyone who needs financial assistance to join us. We quite simply want to meet in person as many patients and caregivers as is possible. Our research working group days are focussed specifically on driving forwards our research priorities, identified as always, through collaborative working and co-production.
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 pushing forwards research. Through this collaboration we produced our 8 aims which underpins all our work and strategy.
One 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. 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.
Thank you.
'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 Kinloch (Speaker) - YouTube
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
'Collaborative working: Taking Action on Inequalities in Rare and Less Common Cancers: Understanding the Issues' Report, Oct 2022
In October 2022 Cancer 52 released a report 'Taking Action on Inequalities in Rare and Less Common Cancers: Understanding the Issues'. Produced by a working group of which SGC UK was a member, this important report identifies the issues and how they might be addressed. You can read it here.
'Harnessing the UK's genomics expertise to improve patient outcomes' Report, Nov 2022
In 2022 we collaborated with the ABPI on their report 'Harnessing the UK's genomics expertise to improve patient outcomes'. You can read the report here.
'Tumour agnostics - Realising the potential of precision medicine' Report, Nov 2022
In 2022 we were part of the roundtable discussion, informing this report. It can be accessed here.
'With advances in our understanding of cancer genomics, we are seeing exciting breakthroughs in the development of new kinds of targeted therapies. But to ensure these therapies are available to patients who are most likely to benefit from them, a precision medicine approach to treatment, reliant on genomic testing, will be essential. However, for such an approach to be effectively delivered in the NHS, supportive policy developments are needed.
To understand the most important policy issues posed by the current and future use of precision medicine and genomic testing in the NHS, we sponsored the charitable think tank PHG Foundation to conduct research with key expert stakeholders. From this research we have developed our ‘Tumour agnostics: realising the potential of precision medicine’ report, which outlines key recommendations for employing precision medicine for tumour agnostic and other targeted cancer treatments within the NHS.
Notably, we recommend:
- A consistent NHS ‘genomics first’ approach to diagnosis and treatment
- Future-proofing NHS cancer panel testing
- Collaboration between professionals and patients to raise awareness of genomic testing for targeted treatments'
Salivary gland cancer: ESMO European Reference Network on Rare Adult Solid Cancers (EURACAN) Clinical Practice Guideline for diagnosis, treatment and follow-up
In November 2022 the 'Salivary gland cancer: ESMO European Reference Network on Rare Adult Solid Cancers (EURACAN) Clinical Practice Guideline for diagnosis, treatment and follow-up' were published. They can be accessed here.
Emma Kinloch, Salivary Gland Cancer UK founder, on what we do (2020).
Welcome to Salivary Gland Cancer UK.
Link to video (from 2020) here.
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.
Thank you.