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Tag: AMEND UK

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AMEND to Hold First Annual Training Day for Regional Volunteers

On Friday, 13th July AMEND will hold its first annual training day for 7 new regional volunteers who were recruited within 48 hours of the call going out earlier this year.  Their roles will include developing regional groups around the UK for peer support of all those affected by multiple endocrine neoplasia, succinate dehydrogenase disorders…

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AMEND Organizes Trekking Weekend to Raise Funds

The Yorkshire Three Peaks, in the Yorkshire Dales, represents a challenge for the keenest of walkers from 29th June to 1st July, 2018. To scale three mountains in two days is no mean feat and provides an exhilarating and demanding trek in some of the most spectacular countryside England has to offer. This fundraising event…

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UK Research Registry Now Collecting Data for MEN1 and pNETs

UK National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs) is now collecting patient data. Patients can sign up to AMEND's specific mailing list here in order to receive more information shortly about how to notify their specialists to get involved.

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AMEND Receives Grant to Roll Out Services Nationwide

AMEND was pleased to receive a small grant from the UK’s Big Lottery Fund to help provide its services on a more local level. The grant enables AMEND to recruit around 10 new volunteers from around the UK to become Regional Representatives of the charity. The new roles will include responsibilities such as being a…

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amendkids
AMEND Marks its 15th Anniversary

2018 marks the 15th year of AMEND’s work to provide information resources and support services to families affected by multiple endocrine neoplasia and associated tumours and disorders. Therefore there is plenty going on this year, such a few highlights: · AMEND members will be taking part in 2 major surveys. The European Multiple Endocrine Neoplasia…

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EMENA, AMEND
AMEND UK Publishes Article in Endocrine-Related Cancer Medical Journal

AMEND CEO, Jo Grey and AMEND Counsellor, Kym Winter, have had their invited Review for the medical journal, Endocrine-Related Cancer (ERC), accepted for publication. The Review, entitled, Prognosis and Quality of Life in Multiple Endocrine Neoplasia Type 2 (MEN2), takes a unique look at the advances made since the development of the genetic test for…

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AMEND National Research Registry
AMEND UK: First UK National Research Registry For MEN1 & Pancreatic Neuroendocrine Tumours In Sight

AMEND, UK, has been working with a team of specialists and specialist centres, led by AMEND Patron, Professor Raj Thakker from Oxford, in developing a new National Research Registry for MEN1 and pancreatic neuroendocrine tumours (pNETs). The Registry is now in its final stages of development and aims to enable researchers to look more closely…

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AMEND UK
Free booklet on issues of employment and returning to work with MEN from AMEND-UK

In a 2016 AMEND-UK, INCA member organization, made a member survey where just over half of people told that their work or career had been impacted in a negative way as a direct result of having multiple endocrine neoplasia, or a related condition. In May 2017 AMEND published a new booklet “Employment & Returning to Work”…

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Unicorn Foundation Australia
Patients can join The International Symposium on Phaeochromocytoma and Paraganglioma in August

Unicorn Foundation Australia, INCA member organization, is part of the organising committee of the 2017 International Symposium on Pheochromocytoma and Paraganglioma conference in Sydney taking place from 30 August - 2 September 2017. Patients or caregivers affected by MEN (1 or 2), Paraganglioma's, Phaeochromocytoma's or VHL can attend this expert meeting to have the opportunity…

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