
LGS Foundation UK & Ireland
182 posts

LGS Foundation UK & Ireland
@LGSFoundationUK
The LGS Foundation is dedicated to improving the lives of individuals with Lennox-Gastaut Syndrome through research, awareness programmes and events.
England, United Kingdom Katılım Nisan 2019
497 Takip Edilen112 Takipçiler
LGS Foundation UK & Ireland retweetledi

A new study has found that an estimated 633,000 people are living with epilepsy in the UK.
You can read more on our website: bit.ly/3R7Cu37
#EpilepsyAwareness
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LGS Foundation UK & Ireland retweetledi
LGS Foundation UK & Ireland retweetledi

Any seizure free day is a good day!! And it's Open Access!! Yes!!
Fenfluramine provides clinically meaningful reduction in frequency of drop seizures in patients with #LennoxGastautSyndrome
#Epilepsy #RareDisease #RareEpilepsies
pubmed.ncbi.nlm.nih.gov/36196777/
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LGS Foundation UK & Ireland retweetledi

This #TedTalk from @Wafula_Sitawa shares her frustrations about living with #epilepsy, especially the mental health & stigma challenges that come with life with #seizures. It's only 8-minutes long & could make a positive difference for someone you know.💙
ted.com/talks/sitawa_w…

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LGS Foundation UK & Ireland retweetledi

Having a shared decision making conversation with people/families about treatment options is very important. An understanding of #whatmatterstoyou informs all conversations. #precisionmedecine offers exciting developments and treatment opportunities. @Pers_Care @cyrilenecullen
EpiCARE@EpiCARE_ERN
Great ongoing discussion on #precisionmedecine, but also about the importance of support and personal discussions with patients and their families. #Rareepilepsies #RomeWorkshop22
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All of these are tremendous initiatives- well done all! @Pers_Care #MakingADiffererence @cyrilenecullen @MariawWillis
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People with lived experience of a long term health condition can learn more about how the NHS works and #MakeADifference
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LGS Foundation UK & Ireland retweetledi

It is very important for families of and people with epilepsy to be aware of the risks. @sudepAction continue fantastic pioneering work and contribute to research papers such as this that offer genuine support and important information to people. @LGSFoundationUK @cyrilenecullen
SUDEP Action@SudepAction
Our vice-chair Prof Mike Kerr and CEO Jane Hanna were heavily involved in this important new paper, highlighting what ‘good’ likes like when it comes to epilepsy care pathways sudep.org/article/import…
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LGS Foundation UK & Ireland retweetledi
LGS Foundation UK & Ireland retweetledi

Want to find out more about Peer Leadership, and joining a network which shapes and influences health and care?..
Join our event tomorrow, Thu 24 November, at either 1-2.30pm or 6-7.30pm to hear from #PeerLeaders like Trevor.
To join email - england.pldp@nhs.net
#100PeerLeaders

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LGS Foundation UK & Ireland retweetledi

What does being a Peer Leader mean to someone with lived experience? Join our event on Thursday 24th November via MS Teams to hear more from Peer Leaders themselves who are actively #MakingADifference for more information email england.pldp@nhs.net to join #100PeerLeaders

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LGS Foundation UK & Ireland retweetledi

Have you seen that we're looking for more Personalised Care ambassadors?
Our blog covers:
✍️ application details
⏰ the time commitments
💡 ideal candidate criteria
Apply by 25th November.
Visit our website for more information: personalisedcareinstitute.org.uk/2022/10/20/joi…
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LGS Foundation UK & Ireland retweetledi

Fantastic to see CORE20PLUS5 for children & young people published today. An approach to develop integrated approaches to driving down health care inequalities and increasing life chances @rukshanakapasi @CDC_tweets @NDTicentral @Pers_Care @nagina_j @SimonSimply @ChangeMakerNo1

Long Wittenham, England 🇬🇧 English
LGS Foundation UK & Ireland retweetledi

Roundtable discussion next week between patients & industry on partnership working & the benefits that brings to patients & industry. Part of #PatientPartnership week events.
Follow link for details ow.ly/Og9550LJuLW
#WorkWithUs

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LGS Foundation UK & Ireland retweetledi

Our support is completely free, confidential, and ongoing.
If you would like to speak to our support team, contact 01235 772852 or email support@sudep.org.

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LGS Foundation UK & Ireland retweetledi

I've completed week 3 of the @FutureLearn course 'Personalised Care: Peer Leadership...'! futurelearn.com/courses/peer-l… #PeerLeader
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LGS Foundation UK & Ireland retweetledi






