2024 Patient Information Day

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

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

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

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

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 →

ACC Support Medical Advisory Team Changes

We are delighted to welcome Dr Cristina Ronchi to the ACC Support UK Medical Advisory Team.  Cristina, a Consultant Endocrinologist and researcher who leads the Adrenal Tumour Service at Queen Elizabeth Hospital Birmingham, is already well-known to ACC Support UK, having been the recipient of 2 Annual Awards for ACC Research, including the 2022 Elliot Dallen Award.  She has also attended our Annual Patient Information Day on several occasions and will do again this year to speak directly with ACC patients about diagnosis, treatments and Continue reading →

Do you have a story to tell?

Patient stories are some of the most popular reads for those newly diagnosed with ACC. Some lovely people have already starred in films about ACC, but for AMEND’s* 20th anniversary, we’re aiming to include 20 written stories on a new page to be constructed on this website.   Do you have a story to tell about you and your experience of diagnosis, treatment and life with ACC? We’d love for you to write it down.   We have a template for you to use if Continue reading →

2023 Patient Information Day

AMEND’s 2023 Annual Patient Information Day, that welcomes those affected by ACC, will be held in central London, on Saturday 20th May.  Dr Cristina Ronchi from Birmingham will be there to answer all your questions on ACC, and there are plenty of other interesting sessions to participate in.  We would love to see as many of our members and friends there as possible.  For more information on the programme and local hotels, as well as to book your spaces, please visit our dedicated webpage.

Dr Ronchi Receives 2022 Research Award

We are pleased to confirm that our 2022 Research Award recipient is Dr Cristina Ronchi from the University of Birmingham.  Her project, Circulating cell-free DNA-based biomarkers for improved management of adrenocortical carcinoma, continues her previous work in this area.  Dr Ronchi receives a total of £12,435 (£10,000 Elliot Dallen ACC Research Award, and £2,435 of the Cerys Akarca ACC Research Award).

Elliot Dallen Trust Presents Cheque

AMEND CEO Jo Grey was delighted to meet Annabel Dallen recently, who presented Jo with a cheque for £10,000 as the 2022 Elliot Dallen Research Award for  ACC.  Annabel is sister of Elliot, who had ACC and who died in September 2020 aged just 31.  Elliot’s family set up the Elliot Dallen Trust in his memory.