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Our Events .

Our 2020 networking events are virtual meetings.

We are hosting three 'gatherings', a patient / researcher focus day, and starting a series of smaller events, in 2020. 

Generally our meetings or 'gatherings' are a few hours long (for virtual meetings), or all day events (for in person meetings), held at the weekend so as many of you can come as possible. They are completely free to attend and we have limited travel and accommodation bursaries available for attendees, if needed.

The events are for those diagnosed with Adenoid Cystic Carcinoma, and other salivary gland cancers, their family, friends and supporters, as well as clinicians and researchers working in this area.  There is always a support session where people can share experiences and discuss with one another.  We also always have informative presentations on anything from the latest research to new treatments, from clinicians actively treating and researching into these cancers.  

Our last patient/researcher focus day was held in Manchester in March 2020.  See our patient-researcher page here for more details. 

July update:

As we all  know, 2020 has thrown up a number of new challenges that we didn't expect!  As a result meetings, get togethers, conferences and events have moved to being virtual.  To keep us all safe and well, we are following suit, with the remainder of our 2020 events now taking place with the help of zoom, having successfully tested it with many of you in May (see the happy smiling faces in the picture above).

In addition to our more traditional gatherings in August and November, which tend to be ACC focused, we're very excited to be kicking off a series of shorter meetings focused on different salivary gland cancers.  We start with Acinic Cell Carincoma this week and follow with Ductal Carcinoma and Secretory Carcinoma.  All details are below.  We've made the meetings a bit later in the day to accommodate different timezones, so that as many of you that want to come along can do (times below are London, UK timezone).

Please email [email protected] if you'd like to come along.  Or message us on Facebook or DM on Twitter - whatever works best for you.

Saturday August 15th 3-5.30pm
Our 'regular gathering' with an Adenoid Cystic Carcinoma slant.  Dr Robert Metcalf to give us an update on the UK research, trials and biobank at The Christie hospital in Manchester.  We are also going to be joined by Dr Teresa Guerrero-Urbano, a clinical oncologist based at Guy's and St. Thomas' hospital in London, UK.  Teresa will be taking Q&A on scans, so please feel free to send through any questions you want answered.  

Wednesday July 15th 4-5.30pm
Acinic Cell Carcinoma: Lessons from Adenoid Cystic Carcinoma - discovering new treatments bench to bedside.

Thursday 17th September 4.30-6pm
Ductal Carcinoma: early access to new treatments that are not yet routinely funded though the NHS.

Thursday 15th Oct 4.30-6pm
Secretory Carcinoma: new treatment options targeting NTRK now funded through the NHS.

To get regular updates about this and other events, join our network, follow us on Facebook or Twitter, or watch this space for further details. 

 

Saturday May 2nd 2020 - Virtual gathering

On Saturday May 2nd we held our first virtual gathering.  It was fantastic to be able to connect even when we are in 'lock-down'.  

First of all we heard from everyone there and welcomed new members, caught up with 'old friends', and had a good discussion around the groups experience with Lenvatinib.

After a break, Emily Dormer joined us to give us some gentle exercises for the head, neck and shoulders to help us with rehab after surgery and other treatments.

Last, but certainly not least, we had Jeff Kaufman from the ACCRF join us to talk through his international view of ACC research and how it's been affected by Covid-19.  His presentation can be accessed here.


Saturday November 2nd 2019, Glasgow, Scotland gathering

The last meeting of 2019 was held on Saturday November 2nd 2019 in Finnieston Quay, Glasgow.

It was a fantastic day, where we heard about the AL101 trial soon to open at the Christie (NOTCH focus) from Dr Metcalf, and internationally from Jeff Kaufman of the ACCRF.  

After a delicious lunch, we had a group discussion between a surgeon, medical oncologist and the patients and carers around the room.  The need for a greater understanding of ACC and how we might get that was discussed.  How can we get patient data and use it safely and appropriately to move things forward?  What would a registry look like and how can we achieve it?

It is fantastic to see people so engaged and to be so supported by our network.

Thank you.

The ACCRF Presentation can be accessed here.


Saturday May 18th 2019 - London, England gathering

Our last event was in London, England on Saturday May 18th 2019. 

We met in Angel, just 10 minutes from Euston and Kings Cross train stations. 

After introductions and a chance to chat with others, we shared a light lunch before presentations from Dr Metcalf and Jeff Kaufman on the latest research into ACC.  It was fantastic to see so many people there.  Check out our Facebook page for pictures from the day.

Want to come along to future events?  Email [email protected] to let us know and Join our network to get updates in the future.


Saturday 17th November 2018 - York, England gathering

On November 17th 2018, more than 50 people living with Adenoid Cystic Carcinoma and their supporters gathered in York for SGC UK’s network meeting.

In the morning, we held a support session. Those living with ACC and their family and friends all had the chance to talk openly about their experiences.

For many, it was the first time they had met anyone else with ACC. They discussed everything from their diagnosis and treatment journeys, to their struggles finding expert advice about this rare cancer, and how they were dealing with its physical and psychological effects. Over lunch, there was more time for everyone to share information and stories.

In the afternoon, the meeting heard from two expert speakers, and everyone had the chance to ask them questions.

Dr Rob Metcalf, Clinical Medical Oncologist and researcher talked about his work at the Christie Hospital, Manchester. He explained how his research into ACC is looking at how the disease can be tackled in two ways. Firstly, by stimulating the immune system to attack it, and secondly, by targeting the faulty genes that drive the cancer.

Our second speaker, who joined us by Skype from the US, was Jeff Kaufman of the ACCRF (Adenoid Cystic Carcinoma Research Foundation).  He gave us an overview of some of the research being done into ACC across the globe.  His presentation can be found here.

Want to attend our next meeting? Join our network for updates.