Salivary Gland Cancer UK

We are pleased to announce that Emma Kinloch has journeyed through award nomination, and underwent the research and judging stages — resulting in her being recognised for a well-deserved award 🥂 Emma has officially been recognised as Rare Cancer NPO Chairperson of the Year 2024 (UK)! A huge congratulations to Emma for all the hard work that goes into Salivary Gland Cancer UK 💐 Now in its fourth year, the CEO Monthly Chairperson Awards honour the outstanding accomplishments of individuals serving as role models. Such individuals are crucial to all organisations, because they lead the way with courage and dedication to achieve their shared mission. https://lnkd.in/gj8yQ6a2 #RareCancerResearch #RareCancerAwareness #RareCancers #RareCancer #RareDiseaseResearch #CharityLeader #Leadership #CharityBoard

The Swallows Charity offers a Restaurant Card to help patients communicate dietary needs when eating out. This card discreetly informs restaurant staff of any challenges due to cancer treatment, ensuring a smoother, more enjoyable dining experience. A fantastic resource for those affected by salivary gland and other head & neck cancers! Your patients can order one from The Swallows website now. https://lnkd.in/eEeEr7VG #HeadAndNeckCancerSupport #HeadAndNeck #HeadAndNeckPathology #MouthCancerAwareness #MouthCancer

We are pleased to announce that Dr. Robert Metcalf has been appointed as Clinical Director for Medical Oncology at The Christie Hospital, Manchester. He will provide strategic and operational leadership to the Medical Oncology Department, including around 60 medical oncology consultants and 60 additional medical oncology doctors, delivering cancer care for patients with all tumour types through 12 hospitals across Greater Manchester and Cheshire. Dr. Metcalf's leadership will be key in driving service excellence and advancing treatment outcomes across the region at a time when demand for oncology care continues to double every 10 years. The Christie NHS Foundation Trust #RareCancerResearch #RareCancerAwareness #RareCancers #RareCancer #RareDiseaseResearch

In 2022, we collaborated with industry colleagues to create genomics leaflets for use by our patients. We worked with Roche Products Limited and, over a period of six months, created a resource that could be downloaded from our website to help patients understand the how, what and why of genomics! A key part of the project was to provide a resource that explained how genomic profiling can help patients with rare salivary gland cancers. We presented the evolution of this project and the resource we created with the ABPI Patient Organisation Forum in one of their collaboration surgeries. Thanks to all in our network who input into this project. In 2025, we will be creating an updated version and look forward to working with key stakeholders once again. Karen Wood The Association of the British Pharmaceutical Industry (ABPI) #CancerCharity #SalivaryGland #CancerSupportGroup #Pathology #Genomics #GenomicsEngland

Adenoid cystic carcinoma (ACC) is one of the more common types of salivary gland cancer. About one in ten of all salivary gland cancers are ACC. ACC most commonly occurs in people in their 40’s or 50’s, which is younger than most cancers. It is more common in women as about six in every ten people affected are women. ACC is most likely to start in the major salivary glands located around the mouth and jaw, but it can also form in minor salivary glands found elsewhere in the head, throat, and windpipe. More rarely, ACC can form in glands similar to salivary glands and appear in tear glands, skin, vulva and breast. ACC is usually a slow-growing cancer (also called indolent or low-grade). However, sometimes ACC does grow and spread much faster, and these ACC cancers are called high-grade. ACC can be difficult to cure with surgery and/or radiotherapy. This cancer can return later in life even after succesful surgery. More research is needed to develop new drug therapies for these cancers. You can find more resources and further information on Adenoid Cystic Carcinoma research and treatment on our website. https://lnkd.in/eaegCvyf #AdenoidCysticCarcinoma #ACC #SalivaryGlandCancer #RareCancerResearch #RareDiseaseResearch #SalivaryGlandCancerResearch #MedicalResearch #ACCRF

Our October gathering was a great success with over 50 patients, caregivers, researchers and clinicians gathering to share patient experiences, support one another and hear from a series of inspirational speakers. We're now creating videos, incorporating your feedback into our planning and very much looking forward to the next one already! Richard (RBV) NHS Ch Berman, Joseph Haigh, Sam Rack The Christie NHS Foundation Trust, The Institute of Cancer Research #GenomicsEngland #SalivaryGlandCancerUK #CancerSupportServices #CancerAwarenessCommunity #CancerCommunity #PatientAdvocacy

It was great to talk and share information about these rare cancers and their unmet needs. Thank you for the support in spreading awareness and thereby contributing to helping us push forwards for better outcomes for patients.

At the EURACAN board meeting in Warsaw last week, we were delighted to present the challenges of Salivary Gland Cancer patients with clinicians, researchers and other ePAGs (Patient Advocacy Groups). We share many challenges with other rare cancers and we all discussed how we can continue to move forwards together and address the unmet needs. Emma Kinloch represented Salivary Gland Cancer UK and the Associazione Italiana Laryngectomizzati (AILAR) on a panel in Warsaw, and was joined in person by Eva-Maria Strömsholm and Laura Urena. Kathy Oliver, Ariane Weinman and other ePAGs joined virtually. It is fantastic to see EURACAN continue to grow and expand. Working across borders is key to moving things forward for rare cancers. It was great to have colleagues from South America and Japan, as well as all over Europe and the UK, in the same room. All discussions over the two days were lively, engaging and fruitful. There is alot of work to do and it is wonderful to have this group committed to doing it. #euracan #rarecancer #salivaryglandcancer #rarecancerresearch #salivaryglandcancerresearch #cancer #patientadvocate

Our Salivary Gland Cancer Research Working Group continues to go from strength to strength. At our meeting, we were delighted to bring together over twenty-five clinicians, researchers and patient advocates from all over the UK and beyond. We welcomed six new members and had lively and interesting discussions to develop our current four research priorities, as well as discuss other ad hoc projects. It's truly inspirational to see so many people who care about these cancers, pushing forward research and working together to improve patient outcomes. Thank you all! Robert Metcalf, Sam Rack, Emma Kinloch, Ian S Boon, Jen Remnant, Jim McCaul, Nagehan Uzuner, Ph.D., Ali Khurram, Jarrod Homer, Ho Michael, Nicole Spardy Burr, Ph.D., Puteri Abdul Haris, Ross Cagan, Sammy Rokoszynski, Sally Crowe, Stuart Winter, Rosanna Hunter, Will Ince #SalivaryGlandCancerCommunity #SalivaryCancerResources #CancerSupportGroups #SalivaryGlandCancerSupport #SalivaryGlandCancerResearch

In September we attended a workshop on 'Innovation and Access in RareCancers' hosted by the Cancer Drug Development Forum (CDDF) and the European Organisation for the Research and Treatment of Cancer (EORTC). Multiple stakeholders from accross the world came together in Amsterdam and online to share perspectives on the current state of play, existing challenges, ongoing collaborations and unmet needs. Discussions included innovative trial designs and potential solutions to improve patient access. It was fantastic to have regulators, industry, clinicians, researchers and patient advocates all in the same room. It was a friendly, collaborative meeting and a fantastic opporunity to meet those with similar goals from all around the world. Thanks to CDDF, EORTC and all the speakers for such fantastic presentations and discussions. Ruth Plummer, Carolyn Hynes, Max Williamson The Cancer Drug Development Forum (CDDF), #RareCancers