Author Archives: accsupport314

New Webcast: Guidelines

January 23, 2025 by accsupport314
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Our latest Webcast on the topic of Guidelines will be launched on Friday 24 January at 7:30pm.  In this episode, AMEND CEO, Jo Grey, talks to Dr Carla Pieterman, about how guidelines are developed and by whom, as well as why doctors sometimes need to deviate from the recommendations.   >Click here to view this and other webcasts    

In Memory of Eileen Spencer

January 7, 2025 by accsupport314
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Our thanks go to the friends and family of the late Eileen Spencer for their donations to ACC Support UK in her memory. Eileen sadly died of ACC on the 5th of November 2024 aged 87. Her daughter, Margi Butler arranged donations in memory of her mum which totalled £300. We send our condolences to Margi and anyone who knew Eileen along with our thanks for thinking of ACC Support UK.

Elliot Dallen Award for ACC Research Winner

October 29, 2024 by accsupport314
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The 2024 Elliot Dallen Award for ACC Research has been awarded to Dr Cristina Ronchi from the University of Birmingham for her project, ‘Circulating cell-free DNA-based biomarkers for longitudinal monitoring of patients with adrenocortical carcinoma’.  Dr Ronchi has been awarded £10,000 from the Elliot Dallen Trust, administered by AMEND/ACC Support UK to continue her research looking to better predict which ACC patients are more likely to see recurrence of their disease.  We send our congratulations to Dr Ronchi on this award.  Read more here.

2024 AMEND AGM Rescheduled

August 6, 2024 by accsupport314
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Registered members will have received an email regarding the AMEND AGM that was to be held at midday on Thursday 31st July. Due to insufficient numbers of votes to reach a quorum, the AGM has now been rescheduled to Wednesday 15th August, with the voting link remaining active up until 6pm on the 14th.  If you have already voted, you do not need to do so again.  If you haven’t seen an email, please check your spam/junk folder.  Thank you in advance to all members Continue reading →

2024 Patient Information Day

March 25, 2024 by accsupport314
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This year’s Annual Patient Information Day, held by AMEND and including all those affected by ACC, will be held on Saturday 1st June, in central Birmingham.  Come along and benefit from a 2-hour Q&A session with an expert in ACC, along with other, relevant and interesting informational sessions.  Tickets are free but donations are welcomed. > Click here for more information and to book

2023 ACC Research Award Winner

September 27, 2023 by accsupport314
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This year’s award is made possible once again thanks to the Elliot Dallen Charitable Trust and their 3-year commitment of £10,000 per year for research into ACC. It was certainly encouraging to receive 3 excellent applications from UK researchers this year which made the judge’s jobs a challenge when selecting just one. However, we are pleased to report that the 2023 ACC Research Award has been awarded to Dr James MacFarlane and team at Cambridge University Hospitals NHS Foundation Trust for their project entitled, ‘Exploring Continue reading →

NETs in RETS

September 27, 2023 by accsupport314
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November 10th each year is NET Cancer Day, initiated by the International Neuroendocrine Cancer Alliance, of which AMEND (and therefore ACCSUK) is a member representing genetic neuroendocrine tumour syndromes.  To better explain the link between NETs and RETS (rare endocrine tumours and syndromes), join us for our webinar, NETs in RETS, with Professor Karim Meeran on Thursday 9th November from 18:00-19:00. On Thursday 9th November, 2023, Professor Karim Meeran from Imperial in London, will give an overview of the relevance of NET Cancer Day to Continue reading →

ADIUVO Clinical Trial Publishes Results Article

September 7, 2023 by accsupport314
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On August 21, the final results of the ADIUVO trial were published online in The Lancet Diabetes & Endocrinology. ADIUVO is the first randomized trial to assess the efficacy and safety of adjuvant mitotane treatment in patients with completely resected adrenocortical carcinoma (ACC). The ADIUVO trial was an independent, investigator-initiated study supported by public funding and endorsed by the European Network for the Study of Adrenal Tumours (ENSAT). The study was the result of a tremendous effort of the ENSAT community. Despite limited funding, the Continue reading →

2023 Annual Patient Information Day Success

May 26, 2023 by accsupport314
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The sun was shining on Saturday 20th May in London for our Annual Patient Information Day, and our venue beside the Regent’s Canal was the perfect place to receive all the members of our rare endocrine diseases communities who had booked to attend. AMEND CEO, Jo Grey, began the proceedings promptly at 10am, giving an overview of the 20-year history of AMEND, of all the diseases we support, and of the plan for day.  Next it was time for the 2-hour disease-specific Q&A sessions, for Continue reading →