AMEND news in Tag: MEN2A
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).
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.
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?
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.
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.
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.
AMEND Invited to Host Session at ThyCa 2022 Survivor’s Conference
We are honoured to have been invited by ThyCa to participate in their 2022 virtual Thyroid Cancer Survivor's Conference, by developing a session about MTC in MEN2 and MEN3, to be held on Friday 16th September at 6pm UK-time.
AMEND Launches MEN2 Patient Experience Films During Thyroid Cancer Month
We meet Liz, Laura and Mandi and hear their experiences of diagnosis and treatment in MEN2A, as well as how they feel that their disease may affect their futures. Each of the three films features all three of our stars discussing these different aspects and are narrated by our Celebrity Patron, Shaun Williamson. They were launched during September 2021 (Thyroid Cancer Awareness Month).
Get Ready for Thyroid Cancer Awareness Month!
September is Thyroid Cancer Awareness Month, and we'll be raising awareness of medullary thyroid cancer. Here's how you can help.....!
Levothyroxine: New prescribing advice for Health Professionals
The UK's Medicines and Healthcare products Regulatory Authority (MHRA) has issued new prescribing advice for health professionals regarding patients who experience issues when switching between different levothyroxine products.