AMEND UK
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amenduk.bsky.social
AMEND UK
@amenduk.bsky.social
100 followers 120 following 78 posts
Informing, supporting, and advocating for the multiple endocrine neoplasia and inherited phaeochromocytoma / paraganglioma syndromes and adrenocortical cancer patient communities. Visit our website www.amend.org.uk. #endosky #PPGL #MEN1 #MEN2 #MEN3 #ACC
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Membership of AMEND is free to anyone affected by MEN or PPGL syndromes, MTC and ACC, as well as to health professionals: www.amend.org.uk/patients/joi...
#MEN1 #MEN2 #MEN3 #MEN2A #MEN2B #PPGL #paraganglioma #phaeochromocytoma #Adrenocorticalcancer #ACC #MTC #medullarythyroidancer
AMEND Patient Webinar on Medullary Thyroid Cancer (endorsed by the BTA). Expert talks, and a live Q&A from 19:00-20:30 on Wednesday 19th November. Registration essential:
zoom.us/webinar/regi...

#MTC #MedullaryThyroidCancer #sporadicMTC #medullarythyroidcancer #thyroidcancer
Please complete the 2nd SCAN survey. Please particularly for health professionals. 📊
The #SCAN2025 Global Survey gives patients the chance to highlight challenges & improve care across the world.
• Questionnaires available in 15 languages.
• Spare 20 minutes to be a changemaker!
✅Take the #SCAN2025 Global Survey today: incalliance.org/scan2025/
#LetsTalkAboutNETs #WeSCAN
Great to be here representing GenNETs, MEN and PPGL syndromes. Wonderful collaborative organisation driven by so many passionate advocates 💪
#INCASummit2025 kicked off in Sofia, Bulgaria, on Sept 8th, gathering representatives of 25 INCA member organizations from all continents, as well as ENETS @enets.org and NANETS @nanets.bsky.social chairs and guests, for 2 inspiring and productive days.
#LetsTalkAboutNETs
Reposted by AMEND UK
📢 SAVE THE DATE - The 10th International Adrenal Cancer Symposium #IACS will take place in Brescia (Italy) 16-18 October 2026! Mark your calendars and spread the voice #cureACC #adrenocorticalcarcinoma #adrenaltumour #ENSAT @a5-adrenal.bsky.social @amenduk.bsky.social
Such a fantastic, inclusive and supportive community. Together with our incredible speakers, staff and volunteers, they make the Annual Information Day so special! Huge thanks to all involved. Until next year all!
#MEN1 #MEN2 #MEN3 #PPGL #ACC.
Here at #ESE/ESPE2025 in the patient experience zone and always happy to chat. We even have video today! @esendocrinology.bsky.social
Reposted by AMEND UK
📌Join the amazing group of #PrimaryCarePhysicians from 35 countries worldwide who already completed the free online CME-accredited #ThinkNENs Global Educational Program for Primary Care Physicians!
✅Check here and enroll: incalliance.org/think-nens/ #LetsTalkAboutNETs
Just one week left to book FREE 2025 Annual Patient Information Day tickets! Central London, Saturday 31st May. Check out our website for programme and bookings.

www.amend.org.uk/patients/sup...

#MEN1 #MEN2 #MEN2A #MEN2B #PPGL #phaeopara #pheopara #ACC #adrenocorticalcancer #patientinformation
Reposted by AMEND UK
AMEND is pleased to offer this FREE webinar for anyone affected by sporadic #MedullaryThyroidCancer from 19:00-20:30 on 18 June with two premiere medical experts from The Royal Marsden. Register via the following link: shorturl.at/CyFOg
#MTC #patienteducation
Reposted by AMEND UK
📌Paul from USA experienced shortness of breath. It took 6 doctors and 3 years before he first learned that he had #pheochromocytoma.
👉Shortness of breath is a very common symptom that can mislead physicians.
✅Get a snapshot in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
‼️ Just one month to go until our 2025 Annual Patient Information Day! FREE event for patients with multiple endocrine neoplasia, inherited paraganglioma syndromes and adrenocortical cancer. 💛
www.amend.org.uk/patients/sup...
#MEN #PPGL #ACC #patienteducation
💚 We would like to introduce the new ACC Support UK website which is now; ▶️ Easier to navigate, ♿️ More accessible, ℹ Contains info on adrenal tumours in children. Thanks to the family/friends of the late Sally Zelenczuk for making this possible. 📲 accsupport.org.uk
#adrenocorticalcancer #ACC
📣 Introducing a new collaboration between NCUK and AMEND to tackle the biggest challenges in our communities: 🔎 Diagnostic Delays, 📍 Lack of pathways to UK CoEs, 💊 Access to new treatments/therapies, 🧪 lack of research/clinical trials, 🧠 Psych Support. 🌐 www.amend.org.uk
💛 AMEND Annual Patient Information Day 2025 extras! Adrenal insufficiency workshop, benefits helpdesk, information tables, and free lunch and refreshments for networking. FREE event for patients, Sat 28 May, London
📲 www.amend.org.uk/patients/sup...
#MENsyndromes #PPGL #ACC #patienteducation
Today is World Hormone Day! Get involved to highlight the importance of hormones, and the recommendations for good hormone health 📲 www.amend.org.uk/world-hormon...
#worldhormoneday2025 #endocrinediseases #MEN1 #MEN2 #MEN2A #MEN2B #PPGL #MTC #ACC #neuroendocrinecancer #rarediseases
💛 AMEND Annual Patient Information Day 2025 superb experts in endocrine and head and neck paraganglioma surgery, speaking just after lunch. FREE event for patients, Sat 28 May, London, for MEN, PPGL and ACC.
www.amend.org.uk/patients/sup...
#MENsyndromes #PPGL #ACC
“This was really meant as a makeup project for women, because women have been excluded from research for so many years,” says Garnet Anderson, a biostatistician who runs the WHI coordinating center.
Reposted by AMEND UK
Let’s change the conversation around #EDCs and work together towards a toxic-free environment. Join us on 14 May to discuss research and public health measures that could help 👉 espe-ese-congress2025.org/legacy-event...

#BecauseHormonesMatter @jeromebertherat.bsky.social
Today we launch a new collaboration with Neuroendocrine Cancer UK (NCUK): the Neuroendocrine Life Alliance! With time and resources still challenging, we will work together to address several common aims. shorturl.at/iE8BM
#neuroendocrinecancer #neuroendocrineneoplasia #neuroendocrinelifealliance
💛 AMEND Annual Patient Information Day 2025 superb line-up of medical experts for our morning Q&A sessions! FREE event for patients with MEN, PPGL, and ACC, Sat 28th May, London
www.amend.org.uk/patients/sup...
#MEN1 #MEN2A #MEN2B #PPGL #ACC
‼⏰ On Thursday, 24 April, the global endocrine community will unite on the first World Hormone Day to raise awareness of the vital role of hormones in health and disease. www.amend.org.uk/world-hormon...
#worldhormoneday #worldhormoneday2025 #becausehormonesmatter #multipleendocrineneoplasia
Lovely article on RET @ 30 in Endocrine Related Cancer by Prof Bruce Ponder and Mr Tom Kurzawinski
erc.bioscientifica.com/view/journal...
#RETgene #MEN2 #MEN2A #MEN2B #multipleendocrineneoplasia #genetics
Reposted by AMEND UK
Read this recent review covering recent advances in #medullary #thyroid #carcinoma treatment, emphasizing surgical and systemic therapies by Mark A Jara and Luciana Audi Castroneves ➡️ doi.org/10.1530/EO-2...