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AMEND UK

@amenduk.bsky.social

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

100 Followers  |  122 Following  |  75 Posts  |  Joined: 18.11.2024  |  2.29

Latest posts by amenduk.bsky.social on Bluesky

πŸ“’ 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

08.07.2025 21:22 β€” πŸ‘ 4    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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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.

31.05.2025 18:28 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Here at #ESE/ESPE2025 in the patient experience zone and always happy to chat. We even have video today! @esendocrinology.bsky.social

12.05.2025 09:32 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ“ŒJoin 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!
βœ…Check here and enroll: incalliance.org/think-nens/ #LetsTalkAboutNETs

08.05.2025 06:20 β€” πŸ‘ 2    πŸ” 2    πŸ’¬ 0    πŸ“Œ 1
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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

07.05.2025 13:05 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Research funding opportunity πŸ”½
@youngdiablo.bsky.social @thyroidbritish.bsky.social @nzammitt.bsky.social @simonhspearce.bsky.social @drpetetaylor.bsky.social @vickiesmith.bsky.social @pituitaryorg.bsky.social @amenduk.bsky.social
#thyroid #endocrinology #ResearchFunding #thyroid #endocrinology

01.05.2025 14:06 β€” πŸ‘ 2    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0
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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

30.04.2025 19:04 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ“ŒPaul from USA experienced shortness of breath. It took 6 doctors and 3 years before he first learned that he had #pheochromocytoma.
πŸ‘‰Shortness of breath is a very common symptom that can mislead physicians.
βœ…Get a snapshot in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs

29.04.2025 07:22 β€” πŸ‘ 4    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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‼️ 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. πŸ’›
www.amend.org.uk/patients/sup...
#MEN #PPGL #ACC #patienteducation

28.04.2025 19:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
New website launched for adrenocortical cancer at www.accsupport.org.uk

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

πŸ’š We would like to introduce the new ACC Support UK website which is now; ▢️ Easier to navigate, ♿️ More accessible, β„Ή Contains info on adrenal tumours in children. Thanks to the family/friends of the late Sally Zelenczuk for making this possible. πŸ“² accsupport.org.uk
#adrenocorticalcancer #ACC

28.04.2025 14:32 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ“£ Introducing a new collaboration between NCUK and AMEND to tackle the biggest challenges in our communities: πŸ”Ž Diagnostic Delays, πŸ“ Lack of pathways to UK CoEs, πŸ’Š Access to new treatments/therapies, πŸ§ͺ lack of research/clinical trials, 🧠 Psych Support. 🌐 www.amend.org.uk

28.04.2025 09:06 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ’› 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
πŸ“² www.amend.org.uk/patients/sup...
#MENsyndromes #PPGL #ACC #patienteducation

26.04.2025 19:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Today is World Hormone Day! Get involved to highlight the importance of hormones, and the recommendations for good hormone health πŸ“² www.amend.org.uk/world-hormon...
#worldhormoneday2025 #endocrinediseases #MEN1 #MEN2 #MEN2A #MEN2B #PPGL #MTC #ACC #neuroendocrinecancer #rarediseases

24.04.2025 08:40 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ’› 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

23.04.2025 19:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

β€œThis 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.

23.04.2025 12:02 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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 πŸ‘‰ espe-ese-congress2025.org/legacy-event...

#BecauseHormonesMatter @jeromebertherat.bsky.social

23.04.2025 09:14 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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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

21.04.2025 08:09 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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πŸ’› 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

19.04.2025 20:01 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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‼⏰ 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

17.04.2025 18:15 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Illustration of DNA with wording: BTF Research Award - Β£35,000 research funding opportunity

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

πŸ“’ 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

16.04.2025 11:41 β€” πŸ‘ 2    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0
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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

03.04.2025 14:22 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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 ➑️ doi.org/10.1530/EO-2...

25.03.2025 13:01 β€” πŸ‘ 4    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
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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!

12.03.2025 16:34 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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

04.03.2025 11:17 β€” πŸ‘ 4    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0
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Can eating invasive species and forgotten crops boost Europe's food security? European researchers propose diversifying diets with novel foods (NF), underutilized crops (NUS), and invasive species (IAS) to combat biodiversity loss and food insecurity, balancing ecological benef...

Can eating invasive species and forgotten crops boost Europe's food security? 🌍πŸ₯¬πŸ¦€ www.news-medical.net/news/2025031... #Food #Biodiversity #SustainableFood #NovelFoods #Food #FoodSecurity #ClimateAction #InvasiveSpecies #NeglectedCrops #Diet

11.03.2025 02:34 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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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

10.03.2025 14:08 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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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

10.03.2025 13:47 β€” πŸ‘ 3    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0

Lovely to see you again!

10.03.2025 13:44 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Submit your paper to the Endocrine Excellence: Discovery Science at #SfEBES2025 Special Collection, and put your research in the spotlight!

πŸ‘‹ Visit the @Bioscientifica stand for more information or πŸ“¨ joe@bioscientifica.com.
Learn more πŸ‘‰ buff.ly/41BYiLq

10.03.2025 11:00 β€” πŸ‘ 4    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
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a man and a woman are jumping in the air while a man holds their hands up in the air . ALT: a man and a woman are jumping in the air while a man holds their hands up in the air .

Anyone else really looking forward to #BES2025 next week in beautiful Harrogate?! We are! Don’t forget to come and visit Gill and me πŸ˜‰ @socendocrinology.bsky.social @britishthyroid.bsky.social @addisonsdisease.bsky.social #awarenessraising #patientrepresentation

06.03.2025 06:34 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

@amenduk is following 20 prominent accounts