📣 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
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.
With huge thanks to our wonderful clinical genetics colleagues 💛
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
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...
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
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
#MEN1 #multipleendocrineneoplasia @socendocrinology.bsky.social
🚀 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...
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
Delighted to been involved in this.
Such a wonderful gift for everyone in the UK with ACC 💚🙏 www.accsupport.org.uk #ACC #adrenocorticalcancer #rarecancers
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
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. 📊
Great to be here representing GenNETs, MEN and PPGL syndromes. Wonderful collaborative organisation driven by so many passionate advocates 💪
📢 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
📌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
Research funding opportunity 🔽
@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
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
📌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
New website launched for adrenocortical cancer at www.accsupport.org.uk
💚 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
