AMEND news in Tag: MEN2B
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).
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.
New Publication on MEN3 (MEN2B)
A new publication, 'Frequency and Impact of Musculoskeletal Symptoms on Quality of Life in MEN2B' has just been published. The article is the culmination of a project by former MSc student, James Henderson from Queen Mary University in London, 'commissioned' by AMEND. Thanks to all those who participated in the research survey. We hope it will highlight the MSK problems experienced by a large number of those with the condition, and ultimately to encourage more research and improve care. The publication is Open Access and can be viewed for free.
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.
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.
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.