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
#endosky #PPGL #MEN1 #MEN2 #MEN3 #ACC
Pinned
AMEND UK
@amenduk.bsky.social
· Jan 22
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
#MEN1 #MEN2 #MEN3 #MEN2A #MEN2B #PPGL #paraganglioma #phaeochromocytoma #Adrenocorticalcancer #ACC #MTC #medullarythyroidancer
Reposted by AMEND UK
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
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
December 2, 2025 at 7:23 AM
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
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.
📌Take your time and watch the recording of the @enets.org ENETS&INCA NET Cancer Day 2025 Educational Webinar: incalliance.org/the-recordin...
👉Delve in patient-friendly discussions about carcinoid syndrome & heart disease, NEC & genetic syndromes.
#LetsTalkAboutNETs #MultipleEndocrineNeoplasia
👉Delve in patient-friendly discussions about carcinoid syndrome & heart disease, NEC & genetic syndromes.
#LetsTalkAboutNETs #MultipleEndocrineNeoplasia
November 25, 2025 at 12:34 PM
Delighted to been involved in this.
Reposted by AMEND UK
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
sallyz-art.square.site
November 24, 2025 at 11:13 AM
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
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
zoom.us/webinar/regi...
#MTC #MedullaryThyroidCancer #sporadicMTC #medullarythyroidcancer #thyroidcancer
October 16, 2025 at 12:09 PM
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
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
• Questionnaires available in 15 languages.
• Spare 20 minutes to be a changemaker!
✅Take the #SCAN2025 Global Survey today: incalliance.org/scan2025/
#LetsTalkAboutNETs #WeSCAN
September 12, 2025 at 6:38 AM
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 💪
#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
#LetsTalkAboutNETs
September 9, 2025 at 7:26 AM
Great to be here representing GenNETs, MEN and PPGL syndromes. Wonderful collaborative organisation driven by so many passionate advocates 💪
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
July 8, 2025 at 9:22 PM
📢 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
Here at #ESE/ESPE2025 in the patient experience zone and always happy to chat. We even have video today! @esendocrinology.bsky.social
May 12, 2025 at 9:32 AM
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
✅Check here and enroll: incalliance.org/think-nens/ #LetsTalkAboutNETs
May 8, 2025 at 6:20 AM
📌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
✅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
www.amend.org.uk/patients/sup...
#MEN1 #MEN2 #MEN2A #MEN2B #PPGL #phaeopara #pheopara #ACC #adrenocorticalcancer #patientinformation
May 7, 2025 at 1:05 PM
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
www.amend.org.uk/patients/sup...
#MEN1 #MEN2 #MEN2A #MEN2B #PPGL #phaeopara #pheopara #ACC #adrenocorticalcancer #patientinformation
Reposted by AMEND UK
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
@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
Are you a UK-based researcher? You are eligible to apply for the @britishthyroid.bsky.social #ResearchAward. 📋
There is one month remaining to apply - make sure you don't miss out! ⏰
Find out more and apply by 12am on Saturday 31 May 2025 👉 bit.ly/3YoKEcr
There is one month remaining to apply - make sure you don't miss out! ⏰
Find out more and apply by 12am on Saturday 31 May 2025 👉 bit.ly/3YoKEcr
May 1, 2025 at 2:06 PM
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
#MTC #patienteducation
April 30, 2025 at 7:04 PM
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
#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
👉Shortness of breath is a very common symptom that can mislead physicians.
✅Get a snapshot in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
April 29, 2025 at 7:22 AM
📌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
👉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
www.amend.org.uk/patients/sup...
#MEN #PPGL #ACC #patienteducation
April 28, 2025 at 7:03 PM
‼️ 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
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
#adrenocorticalcancer #ACC
April 28, 2025 at 2:32 PM
💚 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
#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
April 28, 2025 at 9:06 AM
📣 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
📲 www.amend.org.uk/patients/sup...
#MENsyndromes #PPGL #ACC #patienteducation
April 26, 2025 at 7:02 PM
💛 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
📲 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
#worldhormoneday2025 #endocrinediseases #MEN1 #MEN2 #MEN2A #MEN2B #PPGL #MTC #ACC #neuroendocrinecancer #rarediseases
April 24, 2025 at 8:40 AM
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
#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
www.amend.org.uk/patients/sup...
#MENsyndromes #PPGL #ACC
April 23, 2025 at 7:03 PM
💛 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
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.
The attack on women's health continues: The Women's Health Initiative (WHI) study will be canceled after January 2026.
www.science.org/content/arti...
www.science.org/content/arti...
NIH cancels its first and largest study centered on women
The Women’s Health Initiative has produced numerous influential findings
www.science.org
April 23, 2025 at 12:02 PM
“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
#BecauseHormonesMatter @jeromebertherat.bsky.social
April 23, 2025 at 9:14 AM
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
#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
#neuroendocrinecancer #neuroendocrineneoplasia #neuroendocrinelifealliance
April 21, 2025 at 8:09 AM
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
#neuroendocrinecancer #neuroendocrineneoplasia #neuroendocrinelifealliance
‼⏰ 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
#worldhormoneday #worldhormoneday2025 #becausehormonesmatter #multipleendocrineneoplasia
April 17, 2025 at 6:15 PM
‼⏰ 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
#worldhormoneday #worldhormoneday2025 #becausehormonesmatter #multipleendocrineneoplasia