Multiple endocrine neoplasia type 1

Common Name(s)

Multiple endocrine neoplasia type 1

Multiple endocrine neoplasia, type 1 (MEN1) is an inherited condition that causes tumors of the endocrine system (the body's network of hormone-producing glands). People affected by MEN1 typically develop tumors of the parathyroid gland, the pituitary gland, and the pancreas, although other glands may be involved as well. These tumors are often "functional" and secrete excess hormones, which can cause a variety of health problems. The most common signs and symptoms of MEN1 are caused by hyperparathyroidism (overactive parathyroid gland) and may include kidney stones; thinning of bones; nausea and vomiting; high blood pressure (hypertension); weakness; and fatigue. MEN1 is caused by changes (mutations) in the MEN1 gene and is inherited in an autosomal dominant manner. Management for MEN1 usually includes regular screening to allow for early diagnosis and treatment of endocrine tumors.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Multiple endocrine neoplasia type 1" for support, advocacy or research.

AMEND

AMEND exists to inform and support anyone affected by multiple endocrine neoplasia disorders and associated endocrine tumors and syndromes, and to encourage and fund research into the conditions through our Annual Research Grant program and Young Investigator Awards. We provide free patient-aimed information resources, including the MEN Passport and AMEND-sponsored children's comics. We also run a variety of free educational events in the UK and USA as well as social and fundraising events. The AMEND website is HONCode certified and the charity runs several social media pages and groups (private and public).

Last Updated: 29 Apr 2014

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American Multiple Endocrine Neoplasia

The Hageman Foundation supports patient advocacy for a rare disease called Multiple Endocrine Neoplasia. This disease is so elusive that we are the only non-profit in this country which supports the thousands of patients who have this genetic disease. The Hageman Foundation’s mission is to provide education, support and research, using accurate, up-to-date, medical information on Multiple Endocrine Neoplasia (MEN), otherwise referred to as MEN1, MEN2A, MEN2B, and the Whipple Procedure, which is detailed on our website: HagemanFoundation.org. The Hageman Foundation’s current initiative is to provide educational seminars and an educational website, AMENsupport.org, which is designed for the patients, their families, and their advisors who would otherwise not have the means or wherewithal to obtain the information and guidance.

Last Updated: 15 Feb 2013

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Canadian Multiple Endocrine Neoplasia Society, Inc.

We help people with MEN by referring them to Drs and genetist. We also offer emotional support and literature We can be contacted anytime via email. We do try to find a member close to the newly diagnosed MEN Patient to let them know that "They Are Not Alone"

Last Updated: 31 Jan 2013

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General Support Organizations

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Multiple endocrine neoplasia type 1" for support, advocacy or research.

AMEND

AMEND exists to inform and support anyone affected by multiple endocrine neoplasia disorders and associated endocrine tumors and syndromes, and to encourage and fund research into the conditions through our Annual Research Grant program and Young Investigator Awards. We provide free patient-aimed information resources, including the MEN Passport and AMEND-sponsored children's comics. We also run a variety of free educational events in the UK and USA as well as social and fundraising events. The AMEND website is HONCode certified and the charity runs several social media pages and groups (private and public).

http://www.amend.org.uk

Last Updated: 29 Apr 2014

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Logo
American Multiple Endocrine Neoplasia

The Hageman Foundation supports patient advocacy for a rare disease called Multiple Endocrine Neoplasia. This disease is so elusive that we are the only non-profit in this country which supports the thousands of patients who have this genetic disease. The Hageman Foundation’s mission is to provide education, support and research, using accurate, up-to-date, medical information on Multiple Endocrine Neoplasia (MEN), otherwise referred to as MEN1, MEN2A, MEN2B, and the Whipple Procedure, which is detailed on our website: HagemanFoundation.org. The Hageman Foundation’s current initiative is to provide educational seminars and an educational website, AMENsupport.org, which is designed for the patients, their families, and their advisors who would otherwise not have the means or wherewithal to obtain the information and guidance.

http://www.amensupport.org/

Last Updated: 15 Feb 2013

View Details
Logo
Canadian Multiple Endocrine Neoplasia Society, Inc.

We help people with MEN by referring them to Drs and genetist. We also offer emotional support and literature We can be contacted anytime via email. We do try to find a member close to the newly diagnosed MEN Patient to let them know that "They Are Not Alone"

http://mensociety.ca/

Last Updated: 31 Jan 2013

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General Support Organizations

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General Resources

MEN1 Patient Information Booklet - UK

Detailed booklet on MEN1 written for UK patients to easily understand

Uploaded By: AMEND

Updated 29 Apr 2014

Open Doc
MEN1 Patient Information Booklet - USA

Detailed but easy to read information on MEN1 written for patients in the USA. Produced in 2013

Uploaded By: AMEND

Updated 29 Apr 2014

Open Doc
The Whipple Procedure Patient Information Booklet

Detailed but easy to read information on the surgical procedures known as the Whipple procedure

Uploaded By: AMEND

Updated 29 Apr 2014

Open Doc
 
 
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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Multiple endocrine neoplasia type 1" returned 156 free, full-text research articles on human participants. First 3 results:

A case of type 1 multiple endocrine neoplasia with esophageal stricture successfully treated with endoscopic balloon dilation and local steroid injection combined with surgical resection of gastrinomas.
 

Author(s): Hiroyuki Matsubayashi, Noboru Kawata, Naomi Kakushima, Masaki Tanaka, Kohei Takizawa, Yoshimi Kiyozumi, Yasue Horiuchi, Keiko Sasaki, Teiichi Sugiura, Katsuhiko Uesaka, Hiroyuki Ono

Journal:

 

In type 1 multiple endocrine neoplasia (MEN1), esophageal diseases association with excessive gastrin secretion in Zollinger-Ellison syndrome (ZES) sometimes develop. Here, we reported a case of MEN1/ZES, who developed dysphagia due to reflux esophagitis with severe esophageal stricture. ...

Last Updated: 8 Mar 2017

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Multiple Endocrine Neoplasia Type 1 Presenting as Hypoglycemia due to Insulinoma.
 

Author(s): Eun Byul Kwon, Hwal Rim Jeong, Young Seok Shim, Hae Sang Lee, Jin Soon Hwang

Journal: J. Korean Med. Sci.. 2016 Jun;31(6):1003-6.

 

Multiple endocrine neoplasia (MEN) mutation is an autosomal dominant disorder characterized by the occurrence of parathyroid, pancreatic islet, and anterior pituitary tumors. The incidence of insulinoma in MEN is relatively uncommon, and there have been a few cases of MEN manifested ...

Last Updated: 1 Jun 2016

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Multiple endocrine neoplasia type 1 associated with a new germline Men1 mutation in a family with atypical tumor phenotype.
 

Author(s): Nikolaos Perakakis, Felix Flohr, Gian Kayser, Oliver Thomusch, Lydia Parsons, Franck Billmann, Ernst von Dobschuetz, Susanne Rondot, Jochen Seufert, Katharina Laubner

Journal: Hormones (Athens). ;15(1):113-7.

 

Multiple endocrine neoplasia type 1 (MEN1) is an autosomal-dominant hereditary disorder associated with the development of endocrine tumors due to reduced expression of the tumor suppressor protein menin. Recent studies indicate a general role of menin in carcinogenesis, affecting ...

Last Updated: 18 Apr 2016

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Multiple endocrine neoplasia type 1" returned 29 free, full-text review articles on human participants. First 3 results:

Thoracic and duodenopancreatic neuroendocrine tumors in multiple endocrine neoplasia type 1: natural history and function of menin in tumorigenesis.
 

Author(s): C R C Pieterman, E B Conemans, K M A Dreijerink, J M de Laat, H Th M Timmers, M R Vriens, G D Valk

Journal:

 

Mutations of the multiple endocrine neoplasia type 1 (MEN1) gene lead to loss of function of its protein product menin. In keeping with its tumor suppressor function in endocrine tissues, the majority of the MEN1-related neuroendocrine tumors (NETs) show loss of heterozygosity (LOH) ...

Last Updated: 7 May 2014

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Biliary tree gastrinomas in multiple endocrine neoplasia type 1 syndrome.
 

Author(s): Francesco Tonelli, Francesco Giudici, Gabriella Nesi, Giacomo Batignani, Maria Luisa Brandi

Journal: World J. Gastroenterol.. 2013 Dec;19(45):8312-20.

 

To describe our patients affected with ectopic biliary tree gastrinoma and review the literature on this topic.

Last Updated: 23 Dec 2013

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Multiple endocrine neoplasia type 1 (MEN1) and type 4 (MEN4).
 

Author(s): Rajesh V Thakker

Journal: Mol. Cell. Endocrinol.. 2014 Apr;386(1-2):2-15.

 

Multiple endocrine neoplasia (MEN) is characterized by the occurrence of tumors involving two or more endocrine glands within a single patient. Four major forms of MEN, which are autosomal dominant disorders, are recognized and referred to as: MEN type 1 (MEN1), due to menin mutations; ...

Last Updated: 3 Mar 2014

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Metabolomics and Genetic Diagnosing Pancreatic Neuroendocrine Tumors in MEN1 Patients
 

Status: Recruiting

Condition Summary: Multiple Endocrine Neoplasia

 

Last Updated: 7 Feb 2017

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Non-functioning Pancreatic Neuroendocrine Tumors in MEN1: Somatostatin Analogs Versus NO Treatment
 

Status: Not yet recruiting

Condition Summary: Pancreatic Neuroendocrine Tumors in MEN1

 

Last Updated: 13 Apr 2017

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Veliparib, Capecitabine, and Temozolomide in Patients With Advanced, Metastatic, and Recurrent Neuroendocrine Tumor
 

Status: Not yet recruiting

Condition Summary: Functional Pancreatic Neuroendocrine Tumor; Malignant Somatostatinoma; Merkel Cell Carcinoma; Metastatic Adrenal Gland Pheochromocytoma; Metastatic Carcinoid Tumor; Multiple Endocrine Neoplasia Type 1; Multiple Endocrine Neoplasia Type 2A; Multiple Endocrine Neoplasia Type 2B; Neuroendocrine Neoplasm; Non-Functional Pancreatic Neuroendocrine Tumor; Pancreatic Glucagonoma; Pancreatic Insulinoma; Recurrent Adrenal Cortex Carcinoma; Recurrent Adrenal Gland Pheochromocytoma; Recurrent Merkel Cell Carcinoma; Somatostatin-Producing Neuroendocrine Tumor; Stage III Adrenal Cortex Carcinoma; Stage III Thyroid Gland Medullary Carcinoma; Stage IIIA Merkel Cell Carcinoma; Stage IIIB Merkel Cell Carcinoma; Stage IV Adrenal Cortex Carcinoma; Stage IV Merkel Cell Carcinoma; Stage IVA Thyroid Gland Medullary Carcinoma; Stage IVB Thyroid Gland Medullary Carcinoma; Stage IVC Thyroid Gland Medullary Carcinoma; Thymic Carcinoid Tumor; VIP-Producing Neuroendocrine Tumor; Well Differentiated Adrenal Cortex Carcinoma; Zollinger Ellison Syndrome

 

Last Updated: 10 Jul 2016

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