iiinova — where your digital self keeps evolving

Reposted by AMEND UK

International Neuroendocrine Cancer Alliance (INCA) @inca-netcancerday.bsky.social · 24/07/2026

📢Today is #InternationalSelf-CareDay. Those who help other patients and are patients themselves, risk burnout if they do not practice #self-care. 📱Watch this amazing guide video from Amanda Stork from NeuroEndocrine Cancer Australia: incalliance.org/self-care/ #LetsTalkAboutNETs

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Reposted by AMEND UK

International Neuroendocrine Cancer Alliance (INCA) @inca-netcancerday.bsky.social · 10/07/2026

👏Kudos to AMEND UK @amenduk.bsky.social and Neuroendocrine Cancer UK @neuroendo-can-uk.bsky.social for the successful Neuroendocrine Life Alliance (NLA) Patient Summit 2026! 👉An impressive 97% rated the summit positively. ✅Find out more: incalliance.org/neuroendocri... #LetsTalkAboutNETs

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AMEND UK @amenduk.bsky.social · 26/04/2026

Congratulations and deepest thanks to our wonderful band of runners in today’s #LondonMarathon 🙏🥳💛. Sponsor here www.amend.org.uk/fundraisers-...

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AMEND UK @amenduk.bsky.social · 24/04/2026

Get hormone healthy: follow the 10 recommendations for good hormone health, inc: ⚠️ be aware of early signs + symptoms of endocrine disease ⚠️ adopt a healthy lifestyle ⚠️ eat healthy to avoid preventable vitamin deficiencies ⚠️ avoid plastic packaging #WorldHormoneDay2026 #becausehormonesmatter

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Reposted by AMEND UK

Society for Endocrinology @socendocrinology.bsky.social · 24/04/2026

It's #WorldHormoneDay! We are highlighting the work we do at the Society to raise awareness about the important role hormones play in our health and the steps we can all take to improve #HormoneHealth. Listen to this snippet from our award-winning podcast. More details on this in the thread below⬇️🧵

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Reposted by AMEND UK

Wiebke Arlt @wiebkearlt.bsky.social · 23/04/2026

Decisive action in the UK re forever chemicals ie endocrine-disrupting chemicals (EDCs) like PFAS - progress urgently needed to protect the next generations #becausehormonesmatter #worldhormoneday #WHD2026 Ban 'forever chemicals' in uniforms and frying pans, MPs urge www.bbc.co.uk/news/article...

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AMEND UK @amenduk.bsky.social · 23/04/2026

Help support AMEND's work and raise awareness of our rare endocrine conditions by sponsoring one of our four (yes 4!) London Marathon runners who get their shoes on this Sunday in aid of AMEND. Thanks! #LondonMarathon2026 #MEN1 #MEN2A #MEN2B #SDHB www.amend.org.uk/fundraisers-...

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AMEND UK @amenduk.bsky.social · 16/04/2026

📣 World Hormone Day is approaching on 24 April! We will share: ℹ️ what hormones are and what they do ℹ️ what symptoms occur when things go wrong, and ℹ️ how to keep 'hormone healthy' Get involved at 📲 shorturl.at/sjtpz #BecauseHormonesMatter #worldhormoneday @esendocrinology.bsky.social

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AMEND UK @amenduk.bsky.social · 02/03/2026

Off to a strong start at #SFEBES2026 in Harrogate this week with a special Patient and Public Involvement and Engagement session on Sunday and an update on the #UKISAT registry for metastatic #ACC and #paraganglioma, the advisory committee of which AMEND is a member.

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AMEND UK @amenduk.bsky.social · 18/02/2026

Please pop by to see Sally's work if you can. Open until 20th February. Thank you to Sally's family and friends for their continued support of our ACC Community through their fundraising. 💚 #AdrenocorticalCancer #adrenalcancer #ACC @accsupportuk.bsky.social

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AMEND UK @amenduk.bsky.social · 05/02/2026

Here’s a sneaky peek of our brand new #MEN1 members’ smartphone app. Information + support in one quick access resource, even offline. Available to all registered MEN1 members. Membership is free. www.amend.org.uk/patients/joi...

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AMEND UK @amenduk.bsky.social · 04/02/2026

Cancer turned my world upside down - twice. After battling a #phaeo, I was told that I also had medullary thyroid cancer (as part of #MEN2A), followed a few years later by an #MTC metastasis. Each cancer journey is unique, even more so when it's a #RareCancer. AMEND CEO, Jo Grey #WorldCancerDay

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AMEND UK @amenduk.bsky.social · 04/02/2026

On #WorldCancerDay, we support @ncukcharity in shining a light on #neuroendocrinecancer, an invisible and complex cancer that continues to be missed/misdiagnosed. Read their new report here: bit.ly/4a8r4aw

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AMEND UK @amenduk.bsky.social · 02/02/2026

🚀 Our new app for MEN1 members launched today! The app replaces the MEN1 Member Pack and ensures that patients and carers received the information and support they need as quickly as possible. More information on our website: www.amend.org.uk/new-men1-app...

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Reposted by AMEND UK

International Neuroendocrine Cancer Alliance (INCA) @inca-netcancerday.bsky.social · 02/12/2025

Knowledge is power. The multilingual #NETInfo factsheet on #RadioligandTherapy helps you understand the treatment and feel ready for it. Available in 15 languages. ✅Download in your language: incalliance.org/net-info-pac... #LetsTalkAboutNETs

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AMEND UK @amenduk.bsky.social · 25/11/2025

Delighted to been involved in this.

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Ellie Knott @ellieknott.bsky.social · 24/11/2025

If anyone is looking for Christmas cards, my partner has made some based on his sister, Sally's, art designs to raise money for the Adrenal Cortical Cancer Support charity (@amenduk.bsky.social). All proceeds go to the charity. sallyz-art.square.site

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AMEND UK @amenduk.bsky.social · 16/10/2025

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

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AMEND UK @amenduk.bsky.social · 12/09/2025

Please complete the 2nd SCAN survey. Please particularly for health professionals. 📊

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AMEND UK @amenduk.bsky.social · 09/09/2025

Great to be here representing GenNETs, MEN and PPGL syndromes. Wonderful collaborative organisation driven by so many passionate advocates 💪

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Reposted by AMEND UK

Cristina L Ronchi @cronchi.bsky.social · 08/07/2025

📢 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

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AMEND UK @amenduk.bsky.social · 31/05/2025

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.

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AMEND UK @amenduk.bsky.social · 12/05/2025

Here at #ESE/ESPE2025 in the patient experience zone and always happy to chat. We even have video today! @esendocrinology.bsky.social

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Reposted by AMEND UK

International Neuroendocrine Cancer Alliance (INCA) @inca-netcancerday.bsky.social · 08/05/2025

📌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

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AMEND UK @amenduk.bsky.social · 07/05/2025

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

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AMEND UK @amenduk.bsky.social · 30/04/2025

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

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Reposted by AMEND UK

International Neuroendocrine Cancer Alliance (INCA) @inca-netcancerday.bsky.social · 29/04/2025

📌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

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AMEND UK @amenduk.bsky.social · 28/04/2025

‼️ 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

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AMEND UK @amenduk.bsky.social · 28/04/2025

💚 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

New website launched for adrenocortical cancer at www.accsupport.org.uk

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AMEND UK @amenduk.bsky.social · 28/04/2025

📣 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

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AMEND UK @amenduk.bsky.social · 26/04/2025

💛 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

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AMEND UK @amenduk.bsky.social · 24/04/2025

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

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AMEND UK @amenduk.bsky.social · 23/04/2025

💛 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

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AMEND UK @amenduk.bsky.social · 23/04/2025

“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.

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Reposted by AMEND UK

European Society of Endocrinology @esendocrinology.bsky.social · 23/04/2025

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

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AMEND UK @amenduk.bsky.social · 21/04/2025

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

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AMEND UK @amenduk.bsky.social · 19/04/2025

💛 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

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AMEND UK @amenduk.bsky.social · 17/04/2025

‼⏰ 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

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Reposted by AMEND UK

British Thyroid Foundation (BTF) @britishthyroid.bsky.social · 16/04/2025

📢 Funding opportunity for researchers Applications to our BTF Research Award 2025 are now open! Apply before 31 May www.btf-thyroid.org/btf-research... @thyroidbritish.bsky.social @socendocrinology.bsky.social @drpetetaylor.bsky.social @simonhspearce.bsky.social @nzammitt.bsky.social

Illustration of DNA with wording: BTF Research Award - £35,000 research funding opportunity

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AMEND UK @amenduk.bsky.social · 03/04/2025

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

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Reposted by AMEND UK

Endocrine Oncology @endocrineoncology.bsky.social · 25/03/2025

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...

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AMEND UK @amenduk.bsky.social · 12/03/2025

What a wonderful #sfeBES2025 we had! Thanks to all those who visited our stand. See you at next years BES for at #ECE/ESPE in May!

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PeopleWith @peoplewith.bsky.social · 04/03/2025

We're excited to attend the #SfEBES2025 #Conference in #Harrogate next week from 10-12 March'25! Stop by to discuss how we can #collaborate on improving #clinicalinsights, #treatmentpathways, and #RealWorldData for diverse #patientprofiles. #Endocrinology #PatientRegistries #EndocrineResearch #SfE

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AMEND UK @amenduk.bsky.social · 10/03/2025

Jo (MEM2A) and Gill (MEN1) from AMEND are here and happy to speak with you. Let us show you how we help your patients. #sfeBES2025 @socendocrinology.bsky.social #multipleendocrineneoplasia #paraganglioma #adrenocorticalcancer

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AMEND UK @amenduk.bsky.social · 10/03/2025

For those UK centres interested, here is the link for more info on the National Registry of Adrenal Tumours #sfeBES2025 #NRAT #Adrenalregistry @socendocrinology.bsky.social

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Journal of Endocrinology @joendocrinology.bsky.social · 10/03/2025

Submit your paper to the Endocrine Excellence: Discovery Science at #SfEBES2025 Special Collection, and put your research in the spotlight! 👋 Visit the @Bioscientifica stand for more information or 📨 joe@bioscientifica.com. Learn more 👉 buff.ly/41BYiLq

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