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About Us

We are Salivary Gland Cancer UK

We’re a charity for those with rare salivary gland cancers such as Adenoid Cystic Carcinoma, Acinic Cell Carcinoma, Mucoepidermoid Carcinoma... We are continuing to build an information and support network for people affected by, or treating, these conditions.

We organise regular networking meetings. We give you opportunities to input into ground-breaking research projects. We’re working to improve access to the newest therapies. Having started with Adenoid Cystic Carcinoma initially, our scope has broadened to include other salivary gland cancers. We’re focused on patients and clinicians working together to drive research and increase knowledge. So why not join our network?

We are the result of a unique collaboration between a patient advocate and medical oncologist, both passionately committed to further research into salivary gland cancers.  We’re firmly embedded in the UK and Worldwide research communities. We also have strong links with other patient support groups.

You can read our story in an article published by The BMJ.  It can be accessed here.

We aim to provide reliable, consistent information and support to those with salivary gland cancers, those that support them and those that are working to treat or cure them.  We welcome your support in whatever way you are able to contribute.  We value your time, your knowledge, your presence and your financial support.  Everyone is welcome.

Through patient-clinician collaboration, we have formulated our 8 core aims, which drive our work:

1. To build support and information networks to:
a. Bring together those living with salivary gland cancers, giving them access to the latest information on their disease, and mutual support networks.
b. Raise awareness of salivary gland cancers, their symptoms and treatments amongst the general public and the clinical community.
c. Bring together the patient, clinical and research communities to help drive forward research and improvements in treatments.

2. Support advances in the understanding of the experience of living with and beyond these cancers, and the development of interventions to improve this experience.

3. Improve the rate of early diagnosis for salivary gland cancers.

4. Optimise the pathways to diagnosis.

5. Support the development of standardised guidelines for the management and surveillance of individual salivary gland cancers.

6. Understand the effectiveness of different types of radiotherapy for specific salivary gland cancers.

7. Support the development of surgical and radiotherapy treatments to deliver improved survivorship and quality-of-life post-treatment for salivary gland cancer patients.

8. Support the development of standard drug treatments for salivary gland cancers to improve life expectancy and survivorship by:
a. Supporting basic research into the biology of individual salivary gland cancers.
b. Supporting translational research that turns this basic knowledge into effective treatments.
c. Developing and pushing forward drug trials to test the effectiveness of both existing drugs, and those specifically developed to target a particular salivary gland cancer.

0.3%

0.3% of all cancer cases globally are salivary gland cancers

One of five people One of five people One of five people One of five people One of five people

In the UK, 5 in every million people learn they have ACC every year