AMEND news in Tag: MEN2
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AMEND Co-Authors Article on MEN2
We were honoured to be invited by surgeon, Mr Tom Kurzawinski, to co-write an article for the journal, Endocrine-Related Cancer, about patient experiences of living with a RET gene mutation (causing MEN2 and MEN3).
Click here to learn more
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Survey for MEN Patients
The European MEN Alliance (EMENA), of which AMEND is an active member, has developed a survey for anyone affected by MEN syndromes, to find out what affected patients, partners and parents, consider to be the unmet needs in the patient pathways. Thank you for taking your time to complete this important survey.
Click here to take the survey
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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).
Click here for more information and to book
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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).
Click here for more information
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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.
Click here for more information
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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?
Click to learn more
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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.
Click here to learn more
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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.
Click here for more information
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Join Our Smartphone App Focus Groups!
We are about to begin work on replacing our MEN Passports with a smartphone app. We need to hear the thoughts of those who will use it and are inviting those with MEN2 and MEN3 to join our Focus Group in February.
Click to learn more
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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.
Click here for more information and to book your place