Mindblown: a blog about philosophy.
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Is UK government going to stop my life saving treatment?
Is the UK government going to prevent me from continuing to receive a life saving treatment? Last week, The National Institute for Health and Care Excellence (NICE) refused to accept an application from the pharmaceutical giant, Biogen, to follow the most suitable pathway for assessing the marketing/licensing of its proven, effective and life changing treatment,…
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March 2024 APPG Summary
Patients United was pleased to attend the March 13 All-Party Parliamentary Group (APPG) on MND meeting as virtual guests, along with representatives of the My Name5 Doddie Foundation, MND Scotland and Prof Ammar Al-Chalabi, King’s College, London. The topic was Progress in Research and Access to Treatments.
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Access to treatments APPG
Next Wednesday, March 13, the All Party Parliamentary Group (APPG) on MND will meet in Parliament. The APPG is a chance to brief MPs on the most important issues of interest to the MND community.
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Behind the scenes of EXPERTS-ALS
Behind the scenes of EXPERTS-ALS EXPERTS-ALS is an innovative new platform, which will ‘screen’ (not trial) drugs and compounds to find the ones most likely to be successful at a full phase 3 trial. It will do this by ‘quickly’ looking at the most promising prognostic biomarker, Neurofilament Light Chain (NFL). It is the first…
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Mirocals Update Feb 13th 2024
Mirocals Update Feb 13th 2024 Here is our regular update on Mirocals. Our main Mirocals page has also been updated and, sadly, there is again effectively ‘no update’.
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Fighting hand in hand – Mirocals update
Fighting hand in hand – Mirocals update Sadly, and frustratingly, we still await the Mirocals trial results, 13 months after the top line data was released and some 18 months after the trial ended. We hear you all saying, “That’s the same old update!” Yes, and you would be right.
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Mirocals – Still no transparency
It is now January 8th 2024 with no further update from the MND Association and the Mirocals Consortium regarding the only realistic viable new treatment candidate for our community in the next 2 years, and that is low-dose Interleukin 2.
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Cracking on in 2024
This has been a very busy year in the MND research arena. As further progress is made, and there is much more work to be done, the conversation in the neurologists’ consulting room is also starting to change.
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Launch of the Institute
The new UK MND Research Institute has been officially launched! On Friday 3rd November 2023 at Kings College in London, patients, world leading UK MND researchers, charities and guests attended the formal opening of the Institute.
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Mirocals Open Letter
An open letter to the Mirocals Consortium regarding the ongoing confusion over the ILTOO “managed access program” (= Expanded Access Program – EAP) for their new ILT-101 formulation (n.b. not for Proleukin as used in the Mirocals trial) and potential access to it for UK patients. The MND community is not receiving the communications it…
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