🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

If you’re attending #IEC2023 make sure to meet Ring20UK and Glut1 Deficiency UK 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

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

We welcome BBC Health News discussing cannabidiol-based medicine but it must be clearer that licensed tested medicine like Epidyolex for TSC-related epilepsy is very different to cannabis alone. Epidyolex is an important medicine option in TSC-related epilepsy. bbc.co.uk/news/health-66…

Still time to register for tonight's virtual event! Dr Chris Kingswood (Consultant Nephrologist) and Dr Pooja Takhar (TSA Joint Chief Executive) will give us an all-in-one update on the latest TSC research. Register here: tuberoussclerosis.beaconforms.com/form/1b6f6d9c

We are delighted to share the news that the #EpilepsyResearchInstitute launched today at the ILAE BRITISH BRANCH Annual Scientific Meeting. Our Chair Professor Matthew Walker discussed the Institute’s mission to radically advance research into epilepsy. epilepsy-institute.org.uk/eri/news/intro…

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: edits-study.org/preschool-phase. #TuberousSclerosisComplex #epilepsy #research #ResearchStudy #GetInvolved

#BigGive #ChristmasGiving #Christmas2023

Thanks to you we've smashed our Big Give Christmas Challenge 2023 target! We aimed to raise £8,700, but surpassed this to almost £10,500! Wow! 😮 This means the TSA Support Fund will continue next year. Giving those in the TSC community at financial crisis much needed support.

Our Spring Appeal 2024 focuses on little Jonah Holt, diagnosed with TSC at a few months old. Mum Laura told us about Jonah's diagnosis, its impact, and how we supported them and continue to be here for them and everyone in the TSC community. youtube.com/watch?v=iIiZhp…

#ItsASiblingThing Sibs

Take part in the Cerebra Sleep Project and join our goal to learn more about sleep in rare genetic syndromes! 💤 Please follow this link for more information: redcap.link/s9rjgkyn

Cerebra Sleep Project Cerebra Network are inviting families with TSC to take part in their latest #research study. Find out more ⬇️⬇️⬇️

🚨 We need your voices for the #BigSepsisSurvey2024! Your stories can help improve sepsis care and support services. Complete the survey: sepsistrust.org/the-big-sepsis… Please RT to spread the word! 🧡

Governments may change but medication shortages remain the same. That is why, along with other charities, we have written to new Health Secretary Wes Streeting calling for an urgent meeting to find an urgent solution to the problem. Parkinson's UK Epilepsy Action SUDEP Action

"Widespread service fragmentation for patients and families with tuberous sclerosis complex (TSC) in the Republic of Ireland". rdcu.be/dRh5h

Our founder Laura tells us all about her daughter, their struggles and how a treatment would change their lives. Please watch, share and support. We have the capacity to improve families lives 💜 youtube.com/watch?v=36ZAU9…

This Hogmanay, we're asking residents in our local area to refrain from setting off fireworks, following the death of our red panda kit Roxie on bonfire night. As always, we will do all we can to protect our animals from fireworks, including keeping them indoors and providing

Today is #InternationalEpilepsyDay Over 200,000 people in the UK live with #seizures that cannot be controlled. UK Rare Epilepsies Together (UKRET) will continue working to improve health outcomes for people living with the #rare #epilepsies across the UK #epilepsy #RareDisease #UKRET #StrongerTogether