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So we've created a new website over the last couple of weeks.
Considering we've taken a few different steps with the way the group runs, we thought we would get a new website and email to go with it! (Don't worry and email will be sent to inform all of the changes: new web URL and email, along with our other social media links!) What so you all think? SWLG
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Hi everyone,
BBC North West Tonight featured a segment about lupus and the large investment in research into the disease in Manchester yesterday evening. It featured interviews with Julie Morton (who has lupus) and Prof. Ian Bruce. You can watch the clip (starting at 07:08) online at; http://www.bbc.co.uk/iplayer/episode/b08fm4sf/north-west-tonight-late-news-21022017 Best wishes, SWLG Hi everyone, On October 31st 2017 the government published, ‘Improving Lives: The Work, Health and Disability Green Paper’. The aim of this consultation paper is “to understand why disabled people and people with health conditions might be unable to get a job or keep one, and to recognise the wide range of conditions and circumstances they face”. LUPUS UK National Office has written a response to this consultation and submitted it prior to the deadline this Friday, 17th February 2017. I have attached a copy of our full response. It can also be read on our website at http://www.lupusuk.org.uk/green-paper-response/. This consultation response has been submitted in addition to the one being submitted by ARMA (of which we have been included) on behalf of the musculoskeletal community. Best wishes, SWLG
Hi everyone,
At LUPUS UK National Office we are preparing a report to submit to the Scottish Medicines Consortium (SMC) as part of a consultation into the use of Benlysta (belimumab) for lupus patients. We have produced an online survey to help us collect more information from patients which we can then use for this report. We would like anybody over 18, living in the UK with a diagnosis of SLE to complete the survey if possible. We would especially like anybody who has been given Benlysta treatment to complete it so that we can include their experiences. The survey is available at https://www.surveymonkey.co.uk/r/SMCLUPUSUK and we will be collecting responses until 16th February 2017. Lupus UK have created a page on our website with a few details about this project and a link to the survey - http://www.lupusuk.org.uk/smc-benlysta-consultation/ We would be very grateful if you could help to circulate this survey to your local groups by email and/or social media where possible. P.S. In other news, last week we published the first ‘Topic of the Month’ article for 2017 about diet and healthy eating. You can now read this article at http://www.lupusuk.org.uk/diet-and-healthy-eating/ Best wishes, SWLG |
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February 2017
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