Network of patient advocacy groups driving change for everyone living with rare and complex epilepsies in the UK

Joined February 2025
4 Photos and videos
💜 It's #PurpleDay! A day for raising awareness, listening and sharing experiences. As a network, we're enacting change for everyone living with the #epilepsies, as a range of conditions affecting people in lots of different ways. #epilepsy #EpilepsyAware #TeamPurple
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It's #RareDiseaseDay! We stand proud as a network, working for improved health outcomes for everyone in the UK living with the #rare and complex #epilepsies #RareDiseaseDay2025 #RareDisease #epilepsy #Awareness #MoreThanYouCanImagine
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This #InternationalEpilepsyDay we're delighted to share that fenfluramine has been approved to treat #seizures associated with Lennox-Gastaut Syndrome (LGS) on NHS Scotland. Read our full statement: #epilepsy #advocacy #RareEpilepsies #RareDisease #treatment #epilepsyday
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Today is #InternationalEpilepsyDay Over 200,000 people in the UK live with #seizures that cannot be controlled. @UKRET_ will continue working to improve health outcomes for people living with the #rare #epilepsies across the UK #epilepsy #RareDisease #UKRET #StrongerTogether
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