Living with a #RET gene mutation: patient perspectives. Endocrine-Related Cancer
Authors: CBrain, JGrey, and KPurnell. DOI: doi.org/10.1530/ERC-...
Volume/Issue: Accepted Manuscripts
Article Type: Review Article
Online Publication Date: 01 Oct 2024. #MEN2A #MEN2B #Endosky
Authors: CBrain, JGrey, and KPurnell. DOI: doi.org/10.1530/ERC-...
Volume/Issue: Accepted Manuscripts
Article Type: Review Article
Online Publication Date: 01 Oct 2024. #MEN2A #MEN2B #Endosky
Living with a RET gene mutation: patient perspectives
Multiple endocrine neoplasia type 2 (MEN2) is the collective term for 2 distinct types of autosomal dominantly inherited neuroendocrine neoplasm (NEN) syndromes (Barakat, 2004); MEN2A and MEN 2B (or M...
doi.org
November 21, 2024 at 7:54 AM
Living with a #RET gene mutation: patient perspectives. Endocrine-Related Cancer
Authors: CBrain, JGrey, and KPurnell. DOI: doi.org/10.1530/ERC-...
Volume/Issue: Accepted Manuscripts
Article Type: Review Article
Online Publication Date: 01 Oct 2024. #MEN2A #MEN2B #Endosky
Authors: CBrain, JGrey, and KPurnell. DOI: doi.org/10.1530/ERC-...
Volume/Issue: Accepted Manuscripts
Article Type: Review Article
Online Publication Date: 01 Oct 2024. #MEN2A #MEN2B #Endosky
Check out our new paper on “Medullary Thyroid Cancer Risk and Mortality in Carriers of Incidentally Identified MEN2A RET Variants” ja.ma/3I0VgsJ
July 1, 2025 at 9:41 AM
Check out our new paper on “Medullary Thyroid Cancer Risk and Mortality in Carriers of Incidentally Identified MEN2A RET Variants” ja.ma/3I0VgsJ
Survey for European patients with #MEN1, #MEN2A, #MEN2B, #MEN4 exploring the unmet needs in patients with #MultipleEndocrineNeoplasia syndromes. As Survey from the European MEN Alliance (EMENA). Multiple languages.
ec.europa.eu/eusurvey/run...
ec.europa.eu/eusurvey/run...
November 19, 2024 at 11:25 AM
Survey for European patients with #MEN1, #MEN2A, #MEN2B, #MEN4 exploring the unmet needs in patients with #MultipleEndocrineNeoplasia syndromes. As Survey from the European MEN Alliance (EMENA). Multiple languages.
ec.europa.eu/eusurvey/run...
ec.europa.eu/eusurvey/run...
Living with a RET gene mutation: patient perspectives
in Endocrine-Related Cancer, Authors: Caroline Brain, Joanna Grey, and Kirstie Purnell
🔗 doi.org/10.1530/ERC-...
#endosky #RET #RETgene #MEN2 #MEN2A #MEN2B #endocrinecancer #MTC #medullarythyroidcancer #patientperspectives #RET@30
in Endocrine-Related Cancer, Authors: Caroline Brain, Joanna Grey, and Kirstie Purnell
🔗 doi.org/10.1530/ERC-...
#endosky #RET #RETgene #MEN2 #MEN2A #MEN2B #endocrinecancer #MTC #medullarythyroidcancer #patientperspectives #RET@30
Living with a RET gene mutation: patient perspectives
Multiple endocrine neoplasia type 2 (MEN2) is the collective term for two distinct types of autosomal dominantly inherited neuroendocrine neoplasm syndromes: MEN2A and MEN2B (or MEN3). MEN2 is charact...
doi.org
January 9, 2025 at 11:28 AM
Living with a RET gene mutation: patient perspectives
in Endocrine-Related Cancer, Authors: Caroline Brain, Joanna Grey, and Kirstie Purnell
🔗 doi.org/10.1530/ERC-...
#endosky #RET #RETgene #MEN2 #MEN2A #MEN2B #endocrinecancer #MTC #medullarythyroidcancer #patientperspectives #RET@30
in Endocrine-Related Cancer, Authors: Caroline Brain, Joanna Grey, and Kirstie Purnell
🔗 doi.org/10.1530/ERC-...
#endosky #RET #RETgene #MEN2 #MEN2A #MEN2B #endocrinecancer #MTC #medullarythyroidcancer #patientperspectives #RET@30
AMEND is a UK charity (reg 1153890) providing information resources and support services to the multiple endocrine neoplasia communities. Visit our website for comprehensive information on diagnosis, treatment, and life with an #MENSyndrome
www.amend.org.uk
#MEN1 #MEN2 #MEN3 #MEN2A #MEN2B
www.amend.org.uk
#MEN1 #MEN2 #MEN3 #MEN2A #MEN2B
November 19, 2024 at 11:08 AM
AMEND is a UK charity (reg 1153890) providing information resources and support services to the multiple endocrine neoplasia communities. Visit our website for comprehensive information on diagnosis, treatment, and life with an #MENSyndrome
www.amend.org.uk
#MEN1 #MEN2 #MEN3 #MEN2A #MEN2B
www.amend.org.uk
#MEN1 #MEN2 #MEN3 #MEN2A #MEN2B
#MultipleEndocrineNeoplasia type 2A (MEN2A) is a condition that can be passed down in families. A patient may have the gene change that causes MEN2A, but not have developed any of the tumors.
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
June 3, 2025 at 4:58 AM
#MultipleEndocrineNeoplasia type 2A (MEN2A) is a condition that can be passed down in families. A patient may have the gene change that causes MEN2A, but not have developed any of the tumors.
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
Picture Quiz:
Which systemic disease is not associated with enlarged or prominent corneal nerves?
A) Multiple endocrine neoplasia type 2B (MEN2B)
B) Multiple endocrine neoplasia type 2A (MEN2A)
C) Riley–Day syndrome (familial dysautonomia)
D) Fabry disease
thelancet.com/doi/story/10...
#EndoSky
Which systemic disease is not associated with enlarged or prominent corneal nerves?
A) Multiple endocrine neoplasia type 2B (MEN2B)
B) Multiple endocrine neoplasia type 2A (MEN2A)
C) Riley–Day syndrome (familial dysautonomia)
D) Fabry disease
thelancet.com/doi/story/10...
#EndoSky
August 7, 2025 at 4:37 PM
Picture Quiz:
Which systemic disease is not associated with enlarged or prominent corneal nerves?
A) Multiple endocrine neoplasia type 2B (MEN2B)
B) Multiple endocrine neoplasia type 2A (MEN2A)
C) Riley–Day syndrome (familial dysautonomia)
D) Fabry disease
thelancet.com/doi/story/10...
#EndoSky
Which systemic disease is not associated with enlarged or prominent corneal nerves?
A) Multiple endocrine neoplasia type 2B (MEN2B)
B) Multiple endocrine neoplasia type 2A (MEN2A)
C) Riley–Day syndrome (familial dysautonomia)
D) Fabry disease
thelancet.com/doi/story/10...
#EndoSky
New work on penetrance of incidentally identified pathogenic RET variants, led by Kash Patel. Key findings: (1) Moderate-risk mutations are predominant in this context; (2) the risk of thyroid cancer is lower for population versus clinical ascertainment. www.medrxiv.org/content/10.1...
Mutation Spectrum and Associated Risks of Medullary Thyroid Cancer and All-Cause Mortality in Incidentally Identified MEN2A-Causing RET Variants
Importance RET pathogenic variants cause Multiple Endocrine Neoplasia type 2 (MEN2), characterised by medullary thyroid cancer (MTC). With increasing incidental identification of these variants in asy...
www.medrxiv.org
December 5, 2024 at 10:09 PM
New work on penetrance of incidentally identified pathogenic RET variants, led by Kash Patel. Key findings: (1) Moderate-risk mutations are predominant in this context; (2) the risk of thyroid cancer is lower for population versus clinical ascertainment. www.medrxiv.org/content/10.1...
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
January 22, 2025 at 2:03 PM
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
What's life like with a #RET gene mutation? Read our co-authored article 'Living with a RET gene mutation: Patients' Perspectives' here at Endocrine Related Cancer Journal: erc.bioscientifica.com/view/journal...
#EndocrineCancer #Cancer #Genetics #MEN2A #MEN2B #RETgene
#EndocrineCancer #Cancer #Genetics #MEN2A #MEN2B #RETgene
November 19, 2024 at 11:22 AM
What's life like with a #RET gene mutation? Read our co-authored article 'Living with a RET gene mutation: Patients' Perspectives' here at Endocrine Related Cancer Journal: erc.bioscientifica.com/view/journal...
#EndocrineCancer #Cancer #Genetics #MEN2A #MEN2B #RETgene
#EndocrineCancer #Cancer #Genetics #MEN2A #MEN2B #RETgene
📌Roy from Norway as diagnosed with MEN2A at the age of 15. He excelled in cancer patient advocacy. He is now the chairman of CarciNor and in 2026, Roy was elected to serve on the INCA Board.
📱Watch Roy’s story: incalliance.org/stories/roy-... #LetsTalkAboutNETs #MEN2A
📱Watch Roy’s story: incalliance.org/stories/roy-... #LetsTalkAboutNETs #MEN2A
July 20, 2026 at 6:45 AM
📌Roy from Norway as diagnosed with MEN2A at the age of 15. He excelled in cancer patient advocacy. He is now the chairman of CarciNor and in 2026, Roy was elected to serve on the INCA Board.
📱Watch Roy’s story: incalliance.org/stories/roy-... #LetsTalkAboutNETs #MEN2A
📱Watch Roy’s story: incalliance.org/stories/roy-... #LetsTalkAboutNETs #MEN2A
Due to early detection of #MultipleEndocrineNeoplasia type 2A (MEN2A), made possible by the genetic test, and the high chance of MTC, surgery to remove the thyroid gland is now done in children who carry the gene.
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
June 16, 2025 at 6:35 AM
Due to early detection of #MultipleEndocrineNeoplasia type 2A (MEN2A), made possible by the genetic test, and the high chance of MTC, surgery to remove the thyroid gland is now done in children who carry the gene.
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
A new study by Marijn L van den Berg et al. analyses long‑term calcitonin trends in 52 MEN2A patients after total thyroidectomy, revealing distinct postoperative patterns that could inform more personalised surveillance.
🔓 Read the full article: doi.org/10.1530/ERC-25-0366
🔓 Read the full article: doi.org/10.1530/ERC-25-0366
January 27, 2026 at 11:54 AM
A new study by Marijn L van den Berg et al. analyses long‑term calcitonin trends in 52 MEN2A patients after total thyroidectomy, revealing distinct postoperative patterns that could inform more personalised surveillance.
🔓 Read the full article: doi.org/10.1530/ERC-25-0366
🔓 Read the full article: doi.org/10.1530/ERC-25-0366
Learning continues! Dr. Rajesh Thakker gave an excellent #UCSF Endocrine Grand Rounds about MEN1 covering new guidelines published in the Lancet last month: thelancet.com/journals/lan... Gone are MEN2A & MEN2B (now MEN2 & MEN3)…welcome to the newer MEN4 (which I’ve seen!) & MEN5! #MedSky #EndoSky
Multiple endocrine neoplasia type 1 (MEN1): recommendations and guidelines for best practice
Multiple endocrine neoplasia type 1 (MEN1) is characterised by combined occurrence
of parathyroid tumours, duodenopancreatic neuroendocrine tumours, and anterior pituitary
adenomas. Some patients migh...
thelancet.com
July 16, 2025 at 4:55 PM
Learning continues! Dr. Rajesh Thakker gave an excellent #UCSF Endocrine Grand Rounds about MEN1 covering new guidelines published in the Lancet last month: thelancet.com/journals/lan... Gone are MEN2A & MEN2B (now MEN2 & MEN3)…welcome to the newer MEN4 (which I’ve seen!) & MEN5! #MedSky #EndoSky
Found a local company that does testing for MEN2A and MEN2B gene markers. It’s the first thing I’m going to splurge on when I have disposable income.
August 11, 2026 at 12:12 PM
Found a local company that does testing for MEN2A and MEN2B gene markers. It’s the first thing I’m going to splurge on when I have disposable income.
A single gene mutation can act like a stuck accelerator, pushing thyroid C‑cells into the unchecked growth that defines MEN2A. This overactive receptor keeps sending “grow” signals. To see how one mutation drives a major endocrine disorder, watch my short public health video.
youtu.be/doppAFx4UyA
youtu.be/doppAFx4UyA
MEN2A (Multiple Endocrine Neoplasia Type 2A) & RET Gene Mutation
YouTube video by Dr. Rob Swanda
youtu.be
January 27, 2026 at 7:01 PM
A single gene mutation can act like a stuck accelerator, pushing thyroid C‑cells into the unchecked growth that defines MEN2A. This overactive receptor keeps sending “grow” signals. To see how one mutation drives a major endocrine disorder, watch my short public health video.
youtu.be/doppAFx4UyA
youtu.be/doppAFx4UyA
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
erc.bioscientifica.com/view/journal...
#RETgene #MEN2 #MEN2A #MEN2B #multipleendocrineneoplasia #genetics
April 3, 2025 at 2:22 PM
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
erc.bioscientifica.com/view/journal...
#RETgene #MEN2 #MEN2A #MEN2B #multipleendocrineneoplasia #genetics
Mutation Spectrum and Associated Risks of Medullary Thyroid Cancer and All-Cause Mortality in Incidentally Identified MEN2A-Causing RET Variants https://www.medrxiv.org/content/10.1101/2024.11.22.24317783v1
Mutation Spectrum and Associated Risks of Medullary Thyroid Cancer and All-Cause Mortality in Incidentally Identified MEN2A-Causing RET Variants https://www.medrxiv.org/content/10.1101/2024.11.22.24317783v1
Importance: RET pathogenic variants cause Multiple Endocrine Neoplasia type 2 (MEN2), characterised
www.medrxiv.org
November 23, 2024 at 7:58 PM
Mutation Spectrum and Associated Risks of Medullary Thyroid Cancer and All-Cause Mortality in Incidentally Identified MEN2A-Causing RET Variants https://www.medrxiv.org/content/10.1101/2024.11.22.24317783v1
Survey for women with #MENsyndromes or #VHL actively considering pregnancy or who have been pregnant since diagnosis. Please share or complete where appropriate. On behalf of the University of Cambridge: www.surveymonkey.com/r/pregnancyM...
#pregnancy #geneticdiseases #MEN1 #MEN2A #MEN2B
#pregnancy #geneticdiseases #MEN1 #MEN2A #MEN2B
Pregnancy in MEN and VHL
Take this survey powered by surveymonkey.com. Create your own surveys for free.
www.surveymonkey.com
November 19, 2024 at 11:18 AM
Survey for women with #MENsyndromes or #VHL actively considering pregnancy or who have been pregnant since diagnosis. Please share or complete where appropriate. On behalf of the University of Cambridge: www.surveymonkey.com/r/pregnancyM...
#pregnancy #geneticdiseases #MEN1 #MEN2A #MEN2B
#pregnancy #geneticdiseases #MEN1 #MEN2A #MEN2B
Pheochromocytomas are NETs of the adrenal glands. They can present in #MultipleEndocrineNeoplasia type 2A (MEN2A) but they are almost always benign (not cancer).
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
June 23, 2025 at 6:37 AM
Pheochromocytomas are NETs of the adrenal glands. They can present in #MultipleEndocrineNeoplasia type 2A (MEN2A) but they are almost always benign (not cancer).
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
✅Get informed in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
#MultipleEndocrineNeoplasia type 2A (MEN2A) is an inherited condition caused by a mutation in the RET gene.
👉Almost all MEN2A patients will develop #MedullaryThyroidCancer (MTC) by the age of 40.
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
👉Almost all MEN2A patients will develop #MedullaryThyroidCancer (MTC) by the age of 40.
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
June 9, 2025 at 6:51 AM
#MultipleEndocrineNeoplasia type 2A (MEN2A) is an inherited condition caused by a mutation in the RET gene.
👉Almost all MEN2A patients will develop #MedullaryThyroidCancer (MTC) by the age of 40.
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs
👉Almost all MEN2A patients will develop #MedullaryThyroidCancer (MTC) by the age of 40.
✅Get a grasp of MEN2A in 11 languages: incalliance.org/net-info-pac...
#LetsTalkAboutNETs