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26 Apr 2017

We are holding another of our popular lunches on 3 June at 12:30 this time at Sarti an Italian Restaurant - 42 Renfield Street Glasgow G2 1NE.  Link to google maps here   Link to the website here The restaurant would like final numbers nearer the time so could you let...

24 Apr 2017

We are all very excited about our new "Lets Talk About Nets" Leaflets remember you saw them here first.  They will be a great addition to our information stands.  We hope you like them.

13 Feb 2017

One of our members Jonathan Williamson has been very busy raising money for research into a genetic condition that affects his family.  The genetic mutation SDH-B means that some family members are susceptible to a rare type of NET Phaeochromocytoma.  You can read Jona...

13 Feb 2017

The Scottish Medicines Consortium decision regarding Everolimus (Afinitor) was announced this afternoon. The relevant Detailed Advice Document can be found here.

Thank you to all who took part in the survey and the focus group.   You can read our submission here.

24 Jan 2017

Rare Disease Day, 28 February as you may know is an annual awareness raising event. You can find out more here.  In Scotland the event will be marked with a reception in the Scottish Parliament on 1 March 18:00 -  20:00 hrs .  This event is free to attend and you can...

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© 2018 The Ann Edgar Charitable Trust

Registered Charity No. SCO42556

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