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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We have received an invitation from a company called Healthcare Fieldwork, based just outside Cambridge, UK. They recruit people to take part in paid market research interviews. One of their clients, a pharmaceutical company, would like to gain a better understanding about the experiences and journey of people who have been diagnosed with Gastroenteropancreatic Neuroendocrine tumours (GEP-NETs) and Carcinoid Syndrome in order to identify ways to support them with information and support material. This online research will take place in June 2020 and will take the form of small online discussion forum with other patients. The participants will be paid £150 on completion of the online forum and a 30-minute pre-task as a thank you for the their time and opinions. This research is not intended to be promotional in any way. There will be no attempt to sell, promote or influence participants thinking. It is purely to identify ways our client can support them with information material. If you would like to volunteer to take part please contact Susan Hughes on 01223 855066, or email at


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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