Latest News
Recent News
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Webinar for Sporadic MTC Patients
AMEND is delighted to be hosting a free, live webinar for the sporadic medullary thyroid cancer (MTC) community on Wednesday 18th June from 19:00-20:30. Our expert speakers are Consultant Endocrinologist, Dr Daniel Morganstein, and Consultant Clinical Oncologist, Dr Kate Newbold, both from the Royal Marsden Hospital in London. We hope you can join us.
Click here to register
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Current UK Drug Shortages
In the UK we are currently experiencing shortages of some key drugs used by our community, including injectable hydrocortisone, pancreatic enzyme replacement therapy (PERT), and desmopressin.
Click here to find out more
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Selpercatinib – Can you Help?
AMEND is preparing a patient group submission for the Scottish Medicine's Consortium for the assessment of selpercatinib for use in metastatic MTC with the hope of getting it approved. Can you help us by sending us your input?
Click here for more information
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New Webcast! Parathyroid Surgery
Our latest Webcast on the topic of Parathyroid Surgery launches on Saturday 29th March at 08:00. In this episode, AMEND CEO, Jo Grey, talks to Mr Shad Khan, Endocrine Surgery at Oxford University Hospitals, about parathyroid surgery, particularly in the context of MEN1.
Click here to watch this and other Webcasts
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Annual Patient Information Day Booking Open
The 2025 AMEND Annual Patient Information Day will be held on Saturday 31st May in central London. Disease-specific Q&A sessions with medical experts will be held in the morning and followed by other useful and topical sessions throughout the day. This event is FREE.
Click here for more information and to book
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New Webcast! Guidelines
Our latest Webcast on the topic of Guidelines launched on Friday 24 January. In this episode, AMEND CEO, Jo Grey, talks to Dr Carla Pieterman, about how guidelines are developed and by whom, as well as why doctors sometimes need to deviate from the recommendations.
Click here to watch this and other Webcasts
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2025 Peer Support Meetings Confirmed
We are delighted to report that our Peer Support Volunteers have now scheduled a number of meetings (online or in-person) where you can meet others either to give or receive peer support. Grab a coffee and join us!
Click here for more information
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Fundraising Event Registration Now Live!
If you are interested in fundraising for AMEND, (incl. Phaeo Para Support UK and ACC Support UK), you can now find a wide range of running events for which we have charity places on this website.
Click here for more information
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Rareminds Podcast on Preimplantation Genetic Testing
Rareminds CEO Kym is joined in this podcast by Mary who is currently undergoing pre-implantation genetic testing (PGT - formerly PGD), and Sarah Wynn, CEO of Unique, to discuss what the process involves, and the challenges and benefits it can bring. Rareminds is the provider of AMEND's Counselling Service. PGT is available as a conception method for those affected by MEN syndromes. You can listen to this and other podcasts by Rareminds via their Spotify Account.
Listen via Spotify