AMEND news in Author: Jo Grey
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Additive effect of RET polymorphisms in MEN2A-associated hyperparathyroidism
This study looks at people with a rare inherited condition called MEN2A. This condition can cause several health problems, including thyroid cancer, adrenal gland tumours, and overactive parathyroid glands (called hyperparathyroidism, or HPT). Not everyone with MEN2A develops HPT, and doctors want to understand why.
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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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Guideline: Transition from Paediatric to Adult Endocrine Care
This joint guidance from the European Society for Endocrinology and European Society for Paediatric Endocrinology explains how to support young people with hormone (endocrine) conditions as they move from children’s services to adult healthcare. The move to adult care is a very important time, usually between the ages of about 12 and 25. Many young people stop attending appointments during this period, which can harm their long-term health.
Click here for more information
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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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2026 London Marathon Record!
This year, the London Marathon is held on Sunday 26th April, with a record number of runners participating in aid of AMEND! In addition to our Charity Ballot place recipient, Ed, three other runners are getting their running shoes on to raise essential funds for AMEND. We wish them all the luck in the world and hope that you can sponsor one or more of them.
CLICK HERE FOR MORE INFORMATION
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Liquid Hydrocortisone Discontinued
In May 2025, we were warned by the Department of Health and Social Care (DHSC) of a shortage of liquid hydrocortisone (hydrocortisone sodium phosphate), used for the prevention and treatment of adrenal crisis, with supply expected to resume in May 2026. We share here the news that it has now been permanently discontinued. For more information on this and what to do now, please visit our colleagues at the Addison's Disease Self-Help Group.
Learn more at ASDHG website
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2026 Patient Information Event Open for Bookings
In 2025 Neuroendocrine Cancer UK and AMEND launched the Neuroendocrine Life Alliance. To mark this collaborative partnership, we are hosting a Patient Summit bringing together patients, families, and experts for a day of information, support, and connection. Registration is now open – we would love for you to join us.
Click here for more information and to book
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2026 UK Rare Cancers Act Now Law
The Rare Cancers Act 2026 will prioritise long overlooked aspects of research, and has the potential to transform outcomes for those affected by rare and less common cancers.
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Cryoablation of bone metastases in thyroid and adrenocortical cancers
This study looked at a minimally invasive treatment called cryoablation, which uses extreme cold to destroy cancer that has spread to the bones, in people with thyroid (including MTC) or adrenocortical cancer.
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Long-term calcitonin after thyroidectomy for medullary thyroid cancer in MEN2A
This study followed people with MEN2A who had their thyroid removed to understand how often long-term blood tests for calcitonin are really needed.
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