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 Trust is saddened to learn that Norman Boe passed away peacefully last Tuesday, 17th March, at home. Margaret, and family Douglas and Sheila, were fortunate to be with him right to the end and glad for him that the final days were spent at home. Norman has valiantly fought the ups and downs of his cancer for over 13 years and the family feel it was an overall victory for Norman.

Margaret and Norman have been instrumental in taking forward The Trust's NET Natter partnership with Neuroendocrine Cancer UK, and we extend our gratitude and appreciation to both.

Norman will be greatly missed by everyone who knew him, but unfortunately in these troubled times a funeral is not going to be possible. To keep everyone safe, the family plan to have a cremation on Thursday 26th March at 1.30pm, with only immediate family in attendance. However to enable others to pay your respects from the safety of your home they are looking to stream the service live over the internet (details below), and they do hope that all will be able to join them for a celebration of Norman's life later in the year once normality returns to the world.

You can be part of our service to say goodbye to Norman by accessing a live streaming from 1.25pm on Thursday 26th March (The Service begins at 1.30pm). To access the feed, please visit the following website from 1.25pm on Thursday: You should ‘log in’ on the top right of the page using these login details:

User Name: mortonhall7243

Password: 956947

Should you be unable to access it live, you will be able to access it from Saturday 28th March for a period of 28 days using the same details.

Margaret, Douglas and Sheila will be eternally grateful for the support of both the National Health Service and Marie Curie staff in the last few days of Norman’s life. Those who cared for him were all truly amazing. Should anyone, in memory of Norman, wish to make a charitable donation, the family would welcome any support to Marie Curie. You can access their recent appeal for additional support due to the current Covid-19 crises via this link:


Given the current public health situation we regret to advise all NET Natter meetings are suspended until the situation is resolved. We will confirm on our website when meetings resume.

10th November 2019

We were delighted to welcome over seventy delegates to our 2019 NETs Information Day for patients and their families. The gathering took place at the Edinburgh Park Novotel Hotel.

Following a light lunch delegates heard from a selection of speakers:

Our Chair, David Drummond, reported on The Trust’s activities over the last year, and thanked all those who had been involved in fund raising and other initiatives to help promote our charity.

Our recently retired Trustee, Margaret Boe, updated us on the splendid progress we have been making in developing local NET Natter Groups across the country. In addition to our initial Edinburgh group we also now have local groups in Ayrshire, Glasgow, Fife and Aberdeen – with a possibility of new groups forming in Falkirk and Inverness. Watch this space!

Our guest speaker, Lucy Dornan, from the Beatson Hospital in Glasgow, told patients how the new PRRT facility at the hospital was progressing. Nikie Jervis from our partner organisation down south, the NET Patient Foundation offered her advice on what patients can do to help their wellbeing.

We then heard from Professor Mark Strachan about exciting new developments in NETs, including a new type of scan, Dota-Octreotate Pet, and advances in immunotherapy treatments.

Mark’s colleague, Katie Gibson, summarised the various sources of help and support available to patients and Dr Lucy Wall wound up the day with a report on her NET Nutrition research project.

Speakers at our Patient Information Day: left to right

Margaret Boe (Trustee); Prof Mark Strachan (Trustee); David Drummond (Chair); Dr Lucy Wall; Lucy Dornan; Nikie Jervis; Katie Gibson (Trustee)

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T: 07376 251249


© The Ann Edgar Charitable Trust

Registered Charity No. SCO42556

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