2024 Annual Patient Information Day

AMEND's 2024 Annual Patient Information Day will be held on Saturday 1st June, in central Birmingham. This event is open to anyone affected by MEN or PPGL syndromes, as well as for those affected by ACC and MTC.  Come along and benefit from a 2-hour Q&A session with an expert in your disease, as well as plenty of other relevant sessions.  There is a separate stream for young adults from 12 years of age. Tickets are available on a donation basis (minimum £1 per ticket).

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Volunteer for a new research project

Genetic Counselling Student from Cardiff University, Emma Coats, would like to hear from patients with any of the MEN syndromes and who are based in the UK for her research study looking at patient experiences of surveillance (outpatient appointments, test, scans, etc).

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NETS in RETS

November 10th each year is NET Cancer Day, initiated by the International Neuroendocrine Cancer Alliance, of which AMEND 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.

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Current Unmet Needs in Multiple Endocrine Neoplasia Syndromes

From time to time, AMEND CEO, Jo Grey, is asked to give presentations at conferences and other events, to be the voice of patients with MEN syndromes.  What does she tell them and why?

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Become a Peer Support Volunteer

We are currently recruiting for Peer Support Volunteers, with a preference for volunteers with MEN2 or MEN3 living in the South, Southeast and East of England.  All Volunteers will receive training (x1 weekend or weekday), must attend an annual Feedback & Development Day (x1 weekend), and will be required to hold x1-2 virtual meetings (weekends or weekday evenings), and x2 in-person meetings (weekends) per annum.

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Got a Story to Tell?

Our members love to read about the experience of others with their disease. Some lovely people have already written their 'stories' or starred in our films, but for our 20th anniversary, we're aiming to include another 20 stories on our webpage. Do you have a story to tell about you and your family's experience of diagnosis, treatment and life with your MEN syndrome? We'd love to hear it! We have a template for you to use if you want to, but otherwise, do your own thing and don't forget to send a few photos.

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First Three Speakers for 2023 Event Confirmed!

We are pleased to confirm the first three speakers who will be presenting at our 2023 Annual Patient Information Day on Saturday 6th May in central London.  Prof Ashley Grossman, Prof Karim Meeran, and Dr Ruth Casey will be hosting patient Q&A sessions on MEN1, MEN2 and PPGL syndromes respectively.

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AMEND Film wins Bronze People’s Choice Award

At the Charity Film Awards ceremony for finalists at the Odeon, Leicester Square, on Tuesday 23rd March, we were delighted to learn that AMEND's film, 'Surgery: Claudia's Story', had won a Bronze People's Award, a wonderful testament to the advocacy work our young adult members.

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2022 Annual Patient Information Day

Our 2022 Annual Patient Information Day for anyone affected by MEN and PPGL syndromes, ACC and MTC, will be held at the Holiday Inn, 25 Aytoun Street, Manchester M1 3AE, on Saturday 7th May.  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.

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Last Chance to Vote for Claudia’s Film in the Charity Film Awards

Click here to view and vote!