News on Supply of Somatuline Autogel

As discussions over the UK exit from the European Community intensify concerns have been expressed about the post-Brexit supply of some drugs used in the treatment of NETs.  The Trust recently contacted Ipsen to ask about ongoing supplies , and this is what they said:

Ipsen is advanced in its preparations for Brexit and the potential scenarios and challenges that this may introduce. The utmost priority is to ensure there is no disruption to patient supply of medicines. With one of our medicines manufactured in the UK and distributed to over 80 territories worldwide this remains our priority for patients in the UK, EU and beyond. We take this responsibility seriously and have been preparing for the event of a “hard Brexit” or “no deal” scenario since September 2016. We’ve taken steps to secure additional supply where necessary, in addition to being proactive in other ways to ensure there is no disruption to patients.

Steve Chung
Senior Medical Information Officer, Ipsen Medical Information UK & Ireland

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The Ann Edgar Trust sponsors the NET Patient Foundation ‘NET Natter Initiative’ in Scotland.

NET Natter Meetings are informal support meetings which offer an opportunity to meet with others in the (reasonably) local area who are affected by Neuroendocrine tumours - patients, carers, friends and family.

They are run by local volunteers.

There is no set format and each group can shape their meetings to suit the needs of their attendees.

We have established a very active group in Edinburgh. We meet on the 10th of every month which offers a variety of days to suit our members. Our meetings vary including purely social get-togethers, meetings on a specific relevant topic, an annual Information Day and a couple of times a year we meet for lunch. Time and venue vary so the information can be found in our newsletter and on the website.

We hope to start a NET Natter Group in Glasgow in the near future and subsequently in the other major cities. If you live outwith the main cities and would like to join in, please let us know and we should be able to arrange for you to join by Skype or Google hangouts.

Those who attend these meetings report the importance of meeting others with a similar disease since NETs are relatively unusual and ill-understood by most of the population so it is helpful to meet with others who, through their own experience, have some understanding.

To find out more, please contact our NET Natter Coordinator in Scotland:

Mrs Margaret Boe

Telephone: 0131 441 5466

Lets talk about NETs is the theme for this years NET Cancer Day on 10 November. Catch us on East Coast FM on 107.6 FM 31st October, on the hour and live at 3:00pm.

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T: 07376 251249


© The Ann Edgar Charitable Trust

Registered Charity No. SCO42556

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