Ella Mercer (she/her)
@Ella_Mercer1
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Research Involvement and Comms Officer @UKTSA. Passionate about amplifying patients and carers voices. All views are my own, retweets are not endorsements.
Edinburgh, Scotland
Joined January 2018
Hi #twitter 👋 it's been a while!. I'm delighted to share that a few weeks ago I started my new role as the Research and Partnerships Officer at @UKTSA! . Follow along for all things #TSC #Science #research #clinicaltrials #RareDisease's and #PPI 🧬🔬💊.
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RT @UKRET_: Today is #InternationalEpilepsyDay. Over 200,000 people in the UK live with #seizures that cannot be controlled. @UKRET_ will c….
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RT @EdinburghZoo: This Hogmanay, we're asking residents in our local area to refrain from setting off fireworks, following the death of our….
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RT @CASKResearch: Our founder Laura tells us all about her daughter, their struggles and how a treatment would change their lives. Please….
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RT @VasseghiMary: "Widespread service fragmentation for patients and families with tuberous sclerosis complex (TSC) in the Republic of Irel….
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RT @epilepsysociety: Governments may change but medication shortages remain the same. That is why, along with other charities, we have wri….
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RT @UKSepsisTrust: 🚨 We need your voices for the #BigSepsisSurvey2024! Your stories can help improve sepsis care and support services. Com….
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Cerebra Sleep Project @CerebraNetwork are inviting families with TSC to take part in their latest #research study. Find out more ⬇️⬇️⬇️.
The Cerebra Sleep Project is helping us to understand how sleep problems impact children with TSC. This will help us do something about it. Researcher Rory told us about the project and why you should get involved!. Join the project here:
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RT @CerebraNetwork: Take part in the Cerebra Sleep Project and join our goal to learn more about sleep in rare genetic syndromes! 💤. Please….
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Today we're joining our friends at Sibs to celebrate National Siblings Day! ✨ Siblings can play a huge role in the lives of people with TSC. We'll welcome Sibs to Big Day 2024 on 18 May, to talk about support for sibs: #NationalSiblingsDay2024
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RT @UKTSA: Our Spring Appeal 2024 focuses on little Jonah Holt, diagnosed with TSC at a few months old. Mum Laura told us about Jonah's dia….
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RT @UKTSA: Thanks to you we've smashed our Big Give Christmas Challenge 2023 target! We aimed to raise £8,700, but surpassed this to almost….
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Big Give Christmas Challenge Day 4 - still time to DOUBLE donations at no extra cost to you. We want to hit a £8,700 target to run the TSA Support Fund throughout 2024. Go to our Big Give page to help - all donations through The Big Give will be DOUBLED! .
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The @EDiTS_Study team are still recruiting typically developing infants and infants with tuberous sclerosis complex aged 3-5 for their pre-school phase. Find out more here: #TuberousSclerosisComplex #epilepsy #research #ResearchStudy #GetInvolved.
💜💫Here at King's, the EDiTS Team are wearing purple to help raise awareness for Epilepsy as part of #EpilepsyAwarenessMonth!🎗️#TuberousSclerosisComplex
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RT @EpilepsyInst: We are delighted to share the news that the #EpilepsyResearchInstitute launched today at the @ILAEBRITISH Annual Scientif….
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RT @UKTSA: Still time to register for tonight's virtual event! Dr Chris Kingswood (Consultant Nephrologist) and Dr Pooja Takhar (TSA Joint….
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RT @UKTSA: We welcome @bbchealth discussing cannabidiol-based medicine but it must be clearer that licensed tested medicine like Epidyolex….
bbc.co.uk
Fewer than five patients have been prescribed whole-cannabis medicine, despite it becoming legal in 2018.
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So sorry to hear the news that a member of the @Ring20UK community has passed away. Uncontrolled #epilepsy represents a major challenge for the #RareDisease community - more needs to be done!. #EpilepsyAwareness #PatientSafety.
It is with a heavy 💜we share the sad news that another of our small r(20) community has passed over to the angels. That’s 2 losses to uncontrollable #seizures in 6 months; total 3 in 🇬🇧 (10% of known cases). We need to change the narrative…NOW!.#epilepsy
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Fantastic training delivered by @KC_facilitation today. Very excited to apply the different techniques to our upcoming projects to support more #equitable and productive #PPI and #coproduction in #research. Thank you @BecHanley1/@SLGInvolvement for organising!.
Looking forward to a great day on facilitation skills for involvement with @KC_facilitation and @SLGInvolvement members. Thanks @asthmalunguk for hosting us
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If you’re attending #IEC2023 make sure to meet @Ring20UK and @Glut1UK to learn about their fantastic work and contributions to #UKRET (UK Rare Epilepsies Together), a new network driving national change for the rare #epilepsy community 🧠. #epilepsyawareness #raredisease #PPI.
We'll be there representing @Ring20UK and UK Rare Epilepsies Together! Look forward to seeing you there!.#rarediseases #patientadvocacy #collaboration.
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