Salivary Gland Cancer UK
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  • About Us
    • Our Mission - Our 8 aims
    • The Story so Far - Our 5 year impact Report (2024)
    • SGC UK Governance
      • Sally Crowe
      • Shane Draper
      • Emma Kinloch
      • Robert Metcalf
      • Jackie O'Connor
      • Kemi Olaiya
      • Barry Thomas
    • UK Salivary Gland Cancer Research Working Group (UKSGCWG)
    • PPIE (Patient and Public Involvement and Engagement) Work
    • SGC Research Grants
    • SGC Travel Grants
      • Isobel Read shares her experience of ESMO 2025
      • Sian Dobbs shares her experience of ESMO 2025
    • Salivary Gland Cancer UK Mascots
    • Our Partners
  • Treatment Options
    • Diagnosis
    • Surgery
    • Radiotherapy
    • Drug Therapies
      • Drug Therapies - Immunotherapy
    • Clinical Trials
    • Radiofrequency ablation (RFA)
    • Gene profiling or tumour profiling or genomic testing
    • Patient follow up after treatment for SGC
  • Our Stories
    • Alex's story
    • Alison's story
    • Allison D's story
    • Barry's story
    • Christine's story
    • Dawn's story
    • Heather's story
    • Ian's story
    • Jade's story
    • Jamie's story
    • Jev's story
    • Jim's story
    • Kamla's story
    • Karen's story
    • Matilda's story
    • Sarah's story
    • Shane's story
    • Susan's story
  • Patient and Carer Support
    • Anxiety Management Techniques
    • Exercise for the head, neck and shoulder area
    • Returning to Work
    • Tips on communicating with an electrolarynx
    • How can I best support my mother?
    • Kemi shares her advice for supporting a loved one with cancer
    • Radiotherapy Treatment and Late Effects
      • The Late Effects of Radiotherapy Treatment with Emma Hallam, Consultant Therapeutic Radiographer
      • What is Radiation Induced Fibrosis? And How To Reduce Its Effects
      • Tips for Salivary Gland Cancer Patients Living with Radiotherapy Late Effects
      • Top tips for radiotherapy treatment from our network member Dawn
    • Dawn's tips for someone close to someone with Salivary Gland Cancer
    • Pain
    • Quality of Life (QoL) in Adenoid Cystic Carcinoma (ACC) Patients with Dr Joe Haigh
    • Mindfulness Practice with Emma Hallam, Consultant Therapeutic Radiographer
    • Psychological Support for those affected by Salivary Gland Cancers
  • Support SGC UK (and get involved)
    • Join Our Network (and get our newsletter)
    • Donate tissue to the Biobank
    • Our 2025 Events (gatherings and webinars)
    • Donate and help our work
    • Patient – Researcher Trial Discussions
    • Podcasts and Videos
    • Volunteering with SGC UK at a conference or event
    • Salivary Gland Cancer Day - 4th October
    • SGC UK Shareable Resources
    • Leaflets and Flyers
    • Ribbon badges, baseball caps, trolley coin fobs and more in our shop
  • Salivary Gland Cancers
    • A guide to different types of Salivary Gland Cancers
    • Acinic Cell Carcinoma (AcCC)
    • Adenocarcinoma
    • Adenocarcinoma, NOS
    • Adenoid Cystic Carcinoma (ACC)
    • Basal Cell Adenocarcinoma (BCAC)
    • Hyalinising Clear Cell Carcinoma (CCC)
    • Mucoepidermoid Carcinoma (MEC) & Warthin-like MEC
    • Salivary Duct Carcinoma (SDC)
    • Secretory Carcinoma (SC)
    • Polymorphus adenocarcinoma (PAC)
    • Carcinosarcoma
    • Myoepithelial carcinoma (MC)
    • Genetic alterations in Salivary Gland Cancers
      • NTRK genes
      • The RET gene
      • The NOTCH gene
      • The MYB gene
      • Human epidermal growth factor receptor 2 (HER2)
      • Androgen Receptor (AR)
  • Body sites affected by SGC
    • Major Salivary Glands - Parotid, Sublingual and Submandibular
    • Secretory Glands - The Lacrimal Gland
    • Secretory Glands - Bartholin's Gland
    • Secretory Glands - The Lining of the Trachea
    • Skin
    • Nerves in the Head and Neck - Trigeminal Nerve
    • Nerves in the Head and Neck - Optic Nerve
    • Bone Structures in the Face
    • The Spine
    • Breast
    • The Ears
    • The Eye
    • How we taste
    • How we swallow
  • Fundraising for SGC UK
    • Run
    • Walk
    • Swim
    • Some fundraising ideas
    • Paying in the funds you've raised
    • Fundraising at work
    • Leaving a gift in your will
  • Salivary Gland Cancer Science - Research Updates
    • Salivary gland cancer: new classifications and diagnostic challenges
    • Association of quality of life with mortality in patients with adenoid cystic carcinoma using an internationally-validated QoL questionnaire (EQ-5D-5L)
    • Tracheal Adenoid Cystic Carcinoma: why studying it matters - and how biobanks help
    • New study examining disruption of oncogenic pathways in mucoepidermoid carcinoma (MEC)
    • New study reveals late recurrence and low survival rate of adenoid cystic carcinoma of the breast
    • New study using real-world UK data supports the use of HER2-directed therapies for HER2-positive salivary gland cancers
  • UK Salivary Gland Cancer Research Working Group (UKSGCRWG)
    • Research Working Group Members
    • RQ 1. Address the utility of Guidelines for Salivary Gland Cancers (SGC)
    • RQ 2. Assess the variation in histopathology reporting for Salivary Gland Cancers (SGC)
    • RQ 3. Standardise the decision-making processes for patients who have technically operable, Salivary Gland Cancer (SGC), where the surgery carries high morbidity
    • RQ 4. Improve the diagnostic pathway for Salivary Gland Cancer (SGC) patients
Join Our Network Add to Biobank Our Events Donate Shop

Working for those with rare salivary gland cancers.

Acinic Cell Carcinoma (AcCC)
Adenocarcinoma
Adenocarcinoma, NOS
Adenoid Cystic Carcinoma (ACC)
Basal Cell Adenocarcinoma (BCAC)
Carcinosarcoma
Clear Cell Carcinoma (CCC)
Salivary Duct Carcinoma (SDC)
Secretory Carcinoma (SC)
Mucoepidermoid Carcinoma (MEC)
Myoepithelial Carcinoma (MC)
Polymorphous Adenocarcinoma

Salivary Gland Cancer Day - 4th October

19 Dec 2025

Raising Awareness for a Rare Disease. Welcome to the WORLD'S FIRST Salivary Gland Cancer Day, being held annually on the 4th of October.

SGC Travel Grants

Apply for funding to travel to a conference or workshop. We welcome all applications that are aligned with our strategy.

UK Salivary Gland Cancer Research Working Group (UKSGCWG)

09 Dec 2025

This working group is to identify the gaps in Salivary Gland Cancer Research, develop strategic priorities for this area of research and deliver them.

Basal Cell Adenocarcinoma (BCAC)

Basal Cell Adenocarcinoma (BCAC) accounts for 1-3% of salivary gland cancers

Mucoepidermoid Carcinoma (MEC) & Warthin-like MEC

Mucoepidermoid Carcinoma (MEC) including Warthin-like MEC

Myoepithelial carcinoma (MC)

Myoepithelial carcinoma makes up less than 2% of all salivary gland tumours

Polymorphus adenocarcinoma (PAC)

Polymorphous adenocarcinoma (PAC) accounts for around 12% of malignant salivary gland tumours

Carcinosarcoma

Carcinosarcoma accounts for less than 1% of all salivary gland tumours

Acinic Cell Carcinoma (AcCC)

Acinic cell carcinomas account for 1-6% of salivary gland tumours.

Adenoid Cystic Carcinoma (ACC)

Adenoid Cystic Carcinoma (ACC)

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Salivary Gland Cancers
Our Stories
Patient and Carer Support
Support SGC UK (and get involved)
about 8 hours ago 8 Slots Left for SGC Patients in Major Trial! 🎯 We need to find eligible patients for the CRUK DETERMINE Trial (Treatment Arm 04). This trial focuses on advancing precision medicine for rare cancers, aiming for treatments that are both effective and gentler on the body. WE ARE LOOKING FOR PATIENTS WITH: Salivary Duct Carcinoma (SDC) who are HER2-positive (ERBB2/HER2 amplified or insertion/indels). Adenocarcinoma NOS (Not Otherwise Specified). The DETERMINE trial is testing the targeted therapies Trastuzumab and Pertuzumab, representing a significant step toward reducing severe, long-term side effects. There are currently only EIGHT "slots" remaining in the SGC cohort. Your help in identifying and referring patients is vital to ensuring this groundbreaking research continues! ➡️ WHAT YOU CAN DO: SHARE this post. LEARN MORE about the trial's requirements and participating sites: THANK YOU for your support in these vital trials. #DETERMINETrial #SalivaryGlandCancer #SGC #HER2positive #TargetedTherapy #CancerResearch #ClinicalTrials #PrecisionMedicine #CRUK @SGCancerUK
about a day ago The festive season can be wonderful, but for SGC patients and their loved ones, it can also be exhausting, overwhelming, or difficult due to dietary changes, fatigue, or ongoing treatment. Remember, courage is also knowing when to rest. This December, we encourage you to: ✨ Prioritise your energy: It’s okay to say no to events or leave early. 🍽️ Adapt the menu: Find joy in soft, easy-to-manage versions of festive favourites. 🫂 Lean on your network: Share how you’re feeling with a trusted friend, family member, or our community. Self-care is not selfish; it’s essential. How do you look after your well-being during the Christmas Season? Share your tips below! 👇 #SGCUK #SalivaryGlandCancer #RareCancer #CancerCare #CancerSupport #SelfCare @SGCancerUK
about 2 days ago One Community, One Cause: Thank You for 2025! 🤝 What an incredible year it has been for the Salivary Gland Cancer community. From the first ever Salivary Gland Cancer Day to every small win, we faced it all together. Thank you to every patient who shared their story, every carer who provided unwavering support, every researcher who worked late in the lab, and every donor who made it all possible. Your courage, advocacy, and generosity are the foundation of everything SGC UK achieves. We are building a stronger, more informed, and more supportive community. Let’s carry this momentum into 2026! Happy New Year from the SGC UK Team! 🎉 #SGCUK #RareCancer #PatientAdvocacy #NewYearNewHope #Gratitude #Community @SGCancerUK
about 3 days ago Looking for a thoughtful gift that actually gives back? Why not choose merchandise from SGC UK? Every purchase helps fund vital research and support for the salivary gland cancer community. It’s the perfect way to share some festive cheer while spreading awareness. Our Top Christmas Gift Picks: For the Active Friend: A Technical Running T-Shirt or Vest (£25.00) – perfect for their New Year's fitness goals! For the Everyday Supporter: A stylish Baseball Cap (£10.00) or an essential Jogger Bottle (£10.00). Stocking Fillers: Affordable and impactful gifts like the 20mm Ribbon Badge (£5.00) or an SGC Pen (£2.50). When you shop with us, you’re not just buying a great gift - you’re contributing directly to patient support meetings and research grants. Shop now and give a gift that truly matters this Christmas! #ChristmasGifts #GiftWithPurpose #CharityShopping #SGCUK #SalivaryGlandCancer #SupportSmallCharities @SGCancerUK
about 4 days ago Focusing on a Brighter Future: SGC Research 🔬 As the year draws to a close, we look ahead with hope - a hope built on dedicated research. One of our core aims is supporting the development of better, gentler treatments. In 2025, we saw incredible momentum with trials like PRONTO, an evaluative study investigating proton beam therapy (PBT) for parotid carcinoma. PBT aims to deliver radiation precisely, potentially reducing side effects like taste loss and dry mouth (key challenges reported by patients!). Every donation and every share of information helps accelerate trials like this, paving the way for improved quality of life and survivorship. Let’s keep pushing the boundaries of what’s possible in Salivary Gland Cancer research. #SGCUK #PRONTOTrial #ProtonTherapy #CancerResearch #RareCancerHope #Genomics @SGCancerUK
about 6 days ago Cancer Spotlight: Adenocarcinoma - A Family of SGCs Adenocarcinoma isn't one cancer, but a group of types that can affect the salivary glands, each with unique features. Let's shine a light on four key subtypes: Polymorphous Adenocarcinoma (PAC): Typically slow-growing, found mostly in minor salivary glands (often the roof of the mouth). It primarily affects women around age 60 and has a good prognosis. Diagnosis is aided by a specific genetic mutation: PRKD1 E710D. Cribriform Adenocarcinoma (CASG): More aggressive and has a high chance of spreading to the lymph nodes. It features small cysts and is characterised by fusions in the PRKD1, PRKD2, and PRKD3 genes. Mucinous Adenocarcinoma (MAC): Extremely rare and aggressive, often presenting at an advanced stage in men aged 50s-60s. Research shows a specific genetic abnormality in the AKT1 gene. Microsecretory Adenocarcinoma (MSA): A newly identified, non-aggressive type, often found in the palate, with a specific MEF2C and SS18 gene fusion. Understanding these differences is key to effective diagnosis and treatment. Precision medicine is about treating your specific cancer, not just a label. Read more about the subtypes of Adenocarcinoma on our website: #Adenocarcinoma #PAC #CASG #SalivaryGlandCancer #PrecisionMedicine #SGCUK @SGCancerUK
about 7 days ago Cost of Living Fund from Get A-Head £150 grants for head and neck cancer patients Our friends at Get A-Head, a head and neck cancer charity, have announced a Cost of Living Fund to support people with head and neck cancer, specifically relating to the added cost of living that comes with a cancer diagnosis. Each grant is worth £150 per person, and the application form is very straightforward, and opens on 5th January 2026. To find out more about terms, please visit their website: @SGCancerUK
about 9 days ago The festive season is full of great food, but dry mouth (a common side effect of SGC treatment) can make eating a challenge. Don't let it steal your joy! Here are quick tips for managing Xerostomia and enjoying your festive meals: Sip Smart: Keep water or sparkling water with a slice of lemon nearby. Sips between bites can help lubricate your mouth and enhance taste. Go Soft & Saucy: Gravies, creams, soups, and slow-cooked meats are your friends! Avoid dry, crumbly foods (like dry stuffing) that are hard to swallow. Chew for Saliva: Sugar-free chewing gum or candies can stimulate saliva flow before and during meals. Avoid Irritants: Skip alcohol, caffeine, and overly spicy or acidic foods, as they can further irritate or dehydrate your mouth. Try Frozen Treats: Iced drinks, sorbets, or ice lollies offer relief and temporary numbness to sensitive areas. Be kind to yourself and your body this season. Focus on the company, not just the cuisine! #SGCUK #Xerostomia #DryMouthTips #CancerCare #HolidayEating #SalivaryGlandCancer" @SGCancerUK
about 11 days ago Courage is not the absence of fear, but the triumph over it." — Nelson Mandela This quote perfectly captures the spirit of our Salivary Gland Cancer community. Every diagnosis, every treatment decision, every difficult conversation requires immense courage. It's not about being fearless; it's about acknowledging the fear and choosing to move forward anyway. To all SGC patients, survivors, carers, and researchers: Your strength in the face of uncertainty is a daily triumph. You are demonstrating courage every single day. Let's continue to support each other in overcoming those fears, one step at a time. 💪 #Courage #NelsonMandela #SalivaryGlandCancer #SGCUK #RareCancer #CommunityStrong @SGCancerUK
about 13 days ago Researchers from the University of Sussex are looking for people with experience of cancer andunintentional weight loss to help test a new website which provides information, advice and support for both parents and carers. They are looking for parents and/or carers, aged at least 18 years, who have access to the internet to take part. The session will take 60-90 minutes. To find out more, please see @SGCancerUK
about 14 days ago Anatomy Spotlight: The Spine 🦴 The spine is your body's foundation, protecting the vital nerves of the spinal cord and enabling movement - it’s the definition of resilience. For some patients with Salivary Gland Cancer (SGC), the spine can be a site of concern for metastases (secondary growths). While many patients never face this, understanding the spine's structure is key to vigilance. The spine is split into five sections (Cervical, Thoracic, Lumbar, Sacrum, Coccyx), designed to absorb shock. Symptoms of bone metastases can include persistent back pain or a change in the spine's curve, though often they are asymptomatic in early stages. Stay informed, stay resilient, and always bring up new or persistent back pain with your clinical team. #SGCUK #AnatomySpotlight #SpineHealth #SalivaryGlandCancer #CancerAwareness #Resilience @SGCancerUK
about 17 days ago URGENT: Share Your Voice on Oral, Dental, Ear, Eye and Nasal Products The Department of Health and Social Care (DHSC) is transforming the listing process for medical devices on the Drug Tariff (Part IX), and patient perspectives are central to the assessment process! This is the first time patient insights will help determine which devices are funded by the NHS based on quality and value to users. Wave 1 Focus: ODEEN Products The initial assessment wave (starting March 2026) focuses on Oral, Dental, Ear, Eye, and Nasal (ODEEN) products, including drops, sprays, ointments, and related accessories. Two Ways You Can Help: 1. The DHSC needs Patient Representatives with lived experience of ODEEN products to join the independent advisory panel. The role is remunerated and the 📅 Deadline to Apply to DHSC: Friday 19 December 2025. LEARN MORE HERE : 2. Patient Insights - If you have experiences with ODEEN devices that you would like to share, please reach out to us at SGCUK. These experiences could inform the advisory panel's work.. 📅 Deadline for Submissions: 16 February 2026. This is a critical moment to ground NHS funding decisions in real-world patient needs. #DHSC #MedicalDevices #PatientAdvocacy #NHSEngland #ODEEN #SalivaryGlandCancer @SGCancerUK
Patient Representatives with lived experience of Oral, Dental, Ear, Eye and Nasal Products (including drops, sprays, ointments and related accessories) are needed for an independent advisory panel.

The Department of Health and Social Care (DHSC) is transforming the listing process for medical devices on the Drug Tariff (Part IX), and patient perspectives are central to the assessment process!

This is the first time patient insights will help determine which devices are funded by the NHS based on quality and value to users.

Wave 1 Focus: ODEEN Products

The initial assessment wave (starting March 2026) focuses on Oral, Dental, Ear, Eye, and Nasal (ODEEN) products, including drops, sprays, ointments, and related accessories.

Two Ways You Can Help:

1. The DHSC needs Patient Representatives with lived experience of ODEEN products to join the independent advisory panel. The role is remunerated and the deadline to Apply to DHSC: Friday 19 December 2025.  https://lnkd.in/ejxcgrdj

2. Patient Insights -  If you have experiences with ODEEN devices that you would like to share, please reach out to us at SGCUK. These experiences could inform the advisory panel's work.. Deadline for Submissions: 16 February 2026.

This is a critical moment to ground NHS funding decisions in real-world patient needs.

In addition, the deadline for the clinical applications outlined below 👇 is now extended to Dec 12th.

#DHSC #MedicalDevices #PatientAdvocacy #NHSEngland #ODEEN #SalivaryGlandCancer #PPI #PPIE
@sgcanceruk
about 19 days ago In the News: Reliving SGC Day Media Coverage! We are so pleased that SGC Day got significant media coverage! Huge thanks to our PR partners and the patient voices who shared their stories across multiple radio and audio interviews. Hearing our community's voices amplified is powerful. Listen to the highlights and interviews here: #rarecancer #SGCDAY #Salivaryglandcancer #Cancerawareness #RareCancer @SGCancerUK
about 20 days ago TRIAL OPEN: Dry Mouth Relief After Radiotherapy - We're spreading the word about the AQUAx2 Study, a trial investigating a gene therapy for persistent dry mouth (xerostomia) caused by radiotherapy for Head & Neck cancers. If you or someone you know is affected, this innovative research could be life-changing. Learn more & check eligibility: #Salivaryglandcancer #clinicaltrial #genetherapy #medicalresearch @SGCancerUK
about 21 days ago In the rare cancer world, it often feels like we're facing the impossible. But as the legendary Muhammad Ali said: “Impossible is not a fact. It’s an opinion.” For Patients and Carers: Every day that you navigate treatment, manage symptoms, and keep going, you are proving that impossible is just a word. Your resilience is our motivation. For Researchers: Every complex genomic rearrangement, every frustrating drug trial, is met with the conviction that we have the opportunity to change the prognosis of SGC. For Advocates: We refuse to accept that rare cancers will remain neglected. We explore the power of our collective voice to demand better care and funding. Let's continue to fight for better outcomes, one round at a time. #Inspiration #RareCancer #SalivaryGlandCancer #SGC @SGCancerUK
about 22 days ago Today, our CEO, Emma Kinloch, joins an essential panel discussion during London Global Cancer Week (LGCW) on a defining challenge for global cancer policy: Is delivering cutting-edge innovation compatible with sustainable and equitable cancer care? As policymakers finalise 10-year plans for the NHS and national cancer control strategies worldwide, the pressure is on to balance high-cost, evidence-based treatments with the critical need to address disparities, long waiting times, and variations in quality. Emma will bring the vital perspective of rare cancer patient advocacy to this 'Question Time' style event, emphasising that equity must mean access to specialised, timely care and trials for all cancer patients, including those with rare and complex diagnoses like Salivary Gland Cancer. This virtual event, co-hosted by the Inequalities in Cancer Outcomes Network (ICON) at LSHTM and the Institute of Cancer Policy (ICP) at King's College London, brings together leading voices from research, policy, and advocacy. Panelists include: Ajay Aggarwal Bernard Rachet Richard Torbett MBE Emma Kinloch (SGC UK) Deborah Cohen The debate is free and open to all, with no registration required. It’s a crucial opportunity to hear evidence and shape the priority list for key action areas in cancer policy. #LGCW #CancerPolicy #HealthcareEquity #NHSCancerPlan #InnovationInHealthcare #RareCancerAdvocacy @SGCancerUK
Today, our CEO, Emma Kinloch, joins an essential panel discussion during London Global Cancer Week (LGCW) on a defining challenge for global cancer policy:
Is delivering cutting-edge innovation compatible with sustainable and equitable cancer care?

As policymakers finalise 10-year plans for the NHS and national cancer control strategies worldwide, the pressure is on to balance high-cost, evidence-based treatments with the critical need to address disparities, long waiting times, and variations in quality.

Emma will bring the vital perspective of cancer patient advocacy including rare cancers to this 'Question Time' style event, emphasising that equity must mean access to specialised, timely care and trials for all cancer patients, including those with rare and complex diagnoses like Salivary Gland Cancer.

This virtual event, co-hosted by the Inequalities in Cancer Outcomes Network (ICON) at London School of Hygiene and Tropical Medicine, U. of London and the Institute of Cancer Policy (ICP) at King's College London brings together leading voices from research, policy, and advocacy.

Panelists include:
Ajay Aggarwal
Bernard Rachet
Richard Torbett MBE
Emma Kinloch (SGC UK)
Deborah Cohen

The debate is free and open to all, with no registration required. It’s a crucial opportunity to hear evidence and shape the priority list for key action areas in cancer policy.

https://lnkd.in/eHjMsxv7

#LGCW #CancerPolicy #HealthcareEquity #NHSCancerPlan #InnovationInHealthcare #RareCancerAdvocacy #SalivaryGlandCancer
@sgcanceruk
about 22 days ago Anatomy Spotlight: Salivary Glands in the Trachea - Salivary Gland Cancer is truly a whole-body issue! Did you know SGC can arise in the minor secretory glands lining the Trachea (windpipe)? This is a stark reminder of the anatomical breadth of these rare diseases and why broad awareness is so critical. #SGCAnatomy #RareCancerAwareness #SalivaryGlandCancer #RareCancer @SGCancerUK
Nicola delivered critical insights during #SGCDay on Core Aim 5: Supporting the development of standardised guidelines for SGC management.

Specialised, consistent care, irrespective of the treatment centre, is the foundational requirement for improving patient outcomes across the 23+ diverse tumour types.

Watch her full segment. https://lnkd.in/eSw6iCjr

#ClinicalGuidelines #StandardOfCare #SalivaryGlandCancer #guidelines
@sgcanceruk
about 23 days ago Nicola shared critical insights on SGC Day on developing standardised guidelines for SGC management. Specialised, consistent care is vital for improving patient outcomes across the 23+ types. Watch her full segment from SGC Day now! #Guidelines #ClinicalCare #SGCday #SalivaryGlandCancer @SGCancerUK
about 24 days ago It's never difficult to find an interesting session at ISPOR Europe and there were several that stood out to us. One panel asked why high quality real world data does not always sway decision-makers and called for establishing disease burden stories earlier in approval pathways. This is something that charities and patient advocates stand ready to help with. The challenges of psychedelics for HTA methods resonated with us - the need to develop treatments for patients with no other treatment options, the ethics of using control arms and placebos in these populations and points raised around costing in the societal impacts of treatments into decision making. All of these are shared by salivary gland cancers and other rare diseases. Discussions around early access programmes, collecting data and real-world evidence early in the drug development cycle so it can be included in marketing authorisation discussions and, how to get patients access to drugs that are not yet fully developed but are showing great promise, were music to our ears. Of course there's never enough time and catching up with colleagues is also so important. Thanks to ISPOR Europe for a great few days in the often a bit rainy, but always magnificent, Glasgow. @Medicines and Healthcare products Regulatory Agency @Stephen Maddocks @Anthony Hatswell @Bettina Ryll @Matteo Scarabelli @EFPIA - European Federation of Pharmaceutical Industries and Associations @ISPOR—The Professional Society for Health Economics and Outcomes Research #ISPOREurope #realworlddata #rwd #rwe #patientregistries #psychedelics #HTA #NICE #rarecancerresearch #rwe #realworldevidence #MHRA #EPFIA #raredisease @SGCancerUK
It's never difficult to find an interesting session at ISPOR Europe and there were several that stood out to us. 

One panel asked why high quality real world data does not always sway decision-makers and called for establishing disease burden stories earlier in approval pathways. This is something that charities and patient advocates stand ready to help with.

The challenges of psychedelics for HTA methods resonated with us - the need to develop treatments for patients with no other treatment options, the ethics of using control arms and placebos in these populations and points raised around costing in the societal impacts of treatments into decision making. All of these are shared by salivary gland cancers and other rare diseases. 

Discussions around early access programmes, collecting data and real-world evidence early in the drug development cycle so it can be included in marketing authorisation discussions and, how to get patients access to drugs that are not yet fully developed but are showing great promise, were music to our ears. 

Of course there's never enough time and catching up with colleagues is also so important. Thanks to ISPOR Europe for a great few days in the often a bit rainy, but always magnificent, Glasgow.

Medicines and Healthcare products Regulatory Agency 
Stephen Maddocks
Anthony Hatswell
Bettina Ryll
Matteo Scarabelli
EFPIA - European Federation of Pharmaceutical Industries and Associations
ISPOR—The Professional Society for Health Economics and Outcomes Research
https://lnkd.in/guPNjKfG

#ISPOREurope #realworlddata #rwd #rwe #patientregistries #psychedelics #HTA #NICE #rarecancerresearch #rwe #realworldevidence #MHRA #EPFIA #raredisease 
@sgcanceruk
about 29 days ago Sammy's powerful SGC Day testimonial was a compelling reminder of the strength found in collaboration. Her presentation highlighted the critical role patients and carers play in working directly with clinicians to shape research and care pathways. This patient-clinician partnership is the heart of effective advocacy. It's how we move from feeling isolated to driving collective, informed action. This links to the second of our 8 core aims - Support advances in the understanding of the experience of living with and beyond these cancers, and the development of interventions to improve this experience. Watch her presentation here: - Want to join the conversation and help guide our work? This vital synergy is exactly what our Patient and Public Involvement (PPI) initiative achieves. Find out how you can lend your voice to future research and policy: 👉 Visit our PPI page to get involved: #CarerSupport #PatientEngagement #SalivaryGlandCancer #SGCDay #PPI #PPIE #PatientPublicInvolvement @SGCancerUK
Sammy's powerful SGC Day testimonial was a compelling reminder of the strength found in collaboration. Her presentation highlighted the critical role patients and carers play in working directly with clinicians to shape research and care pathways.

This patient-clinician partnership is the heart of effective advocacy. It's how we move from feeling isolated to driving collective, informed action. This links to the second of our 8 core aims - Support advances in the understanding of the experience of living with and beyond these cancers, and the development of interventions to improve this experience.

Watch her presentation here: - https://lnkd.in/e5sM-2as

Want to join the conversation and help guide our work?

This vital synergy is exactly what our Patient and Public Involvement (PPI) initiative achieves. Find out how you can lend your voice to future research and policy:

👉 Visit our PPI page to get involved: https://lnkd.in/eGZxwNgM

#CarerSupport #PatientEngagement #SalivaryGlandCancer #SGCDay #PPI #PPIE #PatientPublicInvolvement
@sgcanceruk
The future of oncology clinical trials is being discussed right now, and SGC UK is there to represent our patient community.

We are pleased to highlight the ongoing Cancer Drug Development Forum (CDDF) workshop in Brussels (November 17-18, 2025), focused on "Enabling Smarter Clinical Trials to Optimise Patient Care."

While registration has closed, this multi-stakeholder meeting is crucial for shaping how trials are designed and executed globally. Our commitment is to ensure the unique challenges of rare cancers, like SGC, are integrated into these high-level discussions, driving better access and outcomes for patients worldwide.

Are you attending the CDDF workshop in Brussels or online? We would love to connect and coordinate our advocacy efforts on the ground. Please send us a direct message!

#CDDF #ClinicalTrials #Oncology #RareCancer #SalivaryGlandCancer #PatientAdvocacy #GlobalHealth
@sgcanceruk
about a month ago Global Advocacy: Ensuring Salivary Gland Cancer is Part of the Conversation The future of oncology clinical trials is being discussed right now, and SGC UK is there to represent the rare cancer community. We are pleased to highlight the ongoing Cancer Drug Development Forum (CDDF) workshop in Brussels (November 17-18, 2025), focused on "Enabling Smarter Clinical Trials to Optimise Patient Care." While registration has closed, this multi-stakeholder meeting is crucial for shaping how trials are designed and executed globally. Our commitment is to ensure the unique challenges of rare cancers, like SGC, are integrated into these high-level discussions, driving better access and outcomes for patients worldwide. Are you attending the CDDF workshop in Brussels or online? We would love to connect and coordinate our advocacy efforts on the ground. Please send us a direct message! #CDDF #ClinicalTrials #Oncology #RareCancer #SalivaryGlandCancer #PatientAdvocacy #GlobalHealth @SGCancerUK
Rare opportunity for clinical input on Medical Devices – DHSC - Oral, Dental, Eye, Ear and Nasal Products

DHSC is modernising the listing process for medical devices prescribed in the community on Part IX of the Drug Tariff.

As part of this, the Department is looking to appoint co-chairs and members to 2 independent advisory panels (IAPs) to provide clinical input to assess the medical devices (which will include ‘artificial saliva formulations’ and ‘oral film forming agents’).

The 2 IAPs are:
- Point of Care Testing and Hypodermic Equipment (POCT) panel (includes devices used for glucose monitoring)
- Oral, Dental, Eye, Ear and Nasal products (ODEEN) panel

This is a rare opportunity to co-chair or be a member of a Department of Health and Social Care (DHSC) panel shaping the future of medical devices in primary care. This role will help translate clinical evidence into national policy, ensuring high-quality, best-value devices for patients across the NHS - an area representing around £1.6 billion of annual spend.

Information on the opportunities and how to apply can be found here (scroll down past the chair advert to see the member advert): https://lnkd.in/eRZNeQZj

Closing dates:
The closing date for member applications is midday on 1 December 2025.
The closing date for chair applications is midday on 5 December 2025.

If you have any questions, then please contact:
Amy Redhead
Senior Policy Advisor
Medical Technologies & Innovation
Department of Health and Social Care
Amy.redhead\@dhsc.gov.uk

Please share with your networks. PPI roles will be advertised soon.

Department of Health and Social Care
#saliva #headandneckcancer #hnc #medicaldevices #eye #oral #dental #ear #nose
@sgcanceruk
EORTC - European Organisation for Research and Treatment of Cancer patient days did not disappoint! 

Some key highlights for us were theranostics, adverse events reporting, standardising patient reported outcomes (PROs) in trials, pragmatic clinical trials and, a presentation from Sam Rack. Dr Rack is a key member of our Salivary Gland Cancer Research Working Group, and presented on cancer and genomics.

In this picture you can see Winette van der Graaf (EORTC President) and Denis Lacombe (EORTC Director General) in discussion. Our thanks go to them both, Iryna Shakhnenko and all the presenters for a fantastic two days of education, collaboration and networking in an open and welcoming environment.

It was also a pleasure to catch up with colleagues from across Europe and of course, foster new collaborations.

Birgitta Huibregtsen David (Dave) Chuter Anne-Marie Dingemans Sophie Veldhuijzen van Zanten Common Sense Oncology

#patientdays #rarecancer #EORTC #PatientEngagement #EORTC #CancerCare #RareCancers #Collaboration #PatientCentred #ICPV #EURACAN
@sgcanceruk
about a month ago It's #MouthCancerActionMonth, and checking your mouth is vital - rare cancers often get missed Did you know? Rare tumors like Acinic Cell Carcinoma (AcCC) - which accounts for 1-6% of all SGCs - typically present as a persistent lump in the parotid gland (near your jaw/ear). Early detection is crucial. Be Aware: Know that a persistent lump in your parotid, jaw, or neck area needs checking. Be Specific: If you spot anything unusual, ask your GP or dentist for a specific referral to a specialist. Let's make sure rare cancers are part of the conversation this month! #MouthCancerActionMonth #SalivaryGlandCancer #RareCancer #KnowTheSigns #EarlyDiagnosis #CheckYourNeck @SGCancerUK

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Salivary Gland Cancer UK is a registered charity number 1182762.