AMEND news in Tag: Phaeochromocytoma
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AMEND Presents at ENS@T Scientific Meeting
AMEND CEO, Jo Grey, presented 'Patient Experience of Phaeochromocytoma' at the 2026 ENS@T meeting in Porto in October.
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Functional imaging in hereditary endocrine neoplasms
This review explains how newer types of scans, known as functional imaging, are improving the care of people with inherited endocrine tumour syndromes such as MEN1, MEN2, von Hippel-Lindau (VHL) disease and hereditary paraganglioma and phaeochromocytoma syndromes.
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Study to Identify Causes of Interference of the Plasma Free Metanephrine Test
This study looked at whether common medicines or long-term health conditions can cause misleading results in blood tests used to detect rare adrenal tumours called pheochromocytomas and paragangliomas.
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The Real Story Collaboration
AMEND continues its collaboration within this UK-wide, multi-stakeholder collaboration established to better understand and improve the management of adrenal crisis among people living with adrenal insufficiency, including Addison's disease. Adrenal insufficiency in our communities may be caused by removal of both adrenal glands and renders a patient dependent on steroid replacement medication.
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Cardiovascular Risk Profile of Low-dose Prednisolone and its Effect on the Quality of Life in Patients with Adrenal Insufficiency
This study looked at people with adrenal insufficiency, a condition where the body does not make enough important adrenal gland hormones. These patients need daily steroid medicine to stay well.
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Adrenal Crisis Patient Survey
Building on the earlier study, the Addison’s Self-Help Group is leading on a UK project called, The Real Story: Adrenal Crisis Management in the UK, which involves a follow up survey and in-depth interviews to capture patient experiences of preventing and managing adrenal crisis. AMEND is one of the patient groups collaborating so that our communities can be heard too.
Learn more and participate
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2025 Information Day Speakers Confirmed!
Our line-up of excellent expert speakers are now confirmed for our 2025 Annual Patient Information Day in central London. Our friendly and essential information event for patients and partners affected by multiple endocrine neoplasia, inherited paraganglioma syndromes, and adrenocortical cancer is free and includes lunch and refreshments. Come along and find out why it's so highly rated!
Click here for more information and to book
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AMEND Annual Patient Information Day Success
The sun was shining on Saturday 20th May in London for our Annual Patient Information Day, and our venue beside the Regent’s Canal was the perfect place to receive all the members of our rare endocrine diseases communities who had booked to attend.
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Kids’ Cartoon Reaches Charity Film Awards Finals!
We are thrilled that our cartoon for kids about PGL syndromes has reached the finals of the Charity Film Awards! We now have a chance to win a People’s Choice Award if we get enough votes in the 2nd round. So, even if you voted for our film in the first round, please do vote for it again by Friday 10th March! Thank you!
Click to view and vote
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AMEND Awards 2 Research Grants for 2022
The Trustees are pleased to confirm the AMEND Research Awards for 2022. Our thanks to all the applicants, our judges, the Elliot Dallen Trust and fundraisers, the Akarca brothers.
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