Just over a month ago our PhD researcher Kate attended the @UKTSA's Big Day 2024! At this amazing event, bringing together the TSC community, Kate got to present our current work on how smartphones could potentially help young adults with TSC track their everyday life! 💫❇️
TSC researchers have an exciting new study to see if a smartphone app is effective for people with TSC aged 16 - 35 to track feelings and symptoms.
By taking part, you'll help create innovative ways to manage emotional and physical aspects of TSC.
https://t.co/cpdJ2JsHS2
Interested in #epilepsy and #pregnancy, in particular the outcomes of the children? Come and do a PhD with myself and others which will be working with the UK #epilepsy and #pregnancy register. https://t.co/j2Qjux9xmS
Global TSC Awareness Day is here! 💚🤩 A big chance to boost understanding of TSC - especially for those who don't know lots about the condition. Our fab team, amazing TSC researchers and brilliant people in the TSC community made this vid all about TSC - share far and wide! 🔊
Today the 15th of May marks the Global Awareness day of TSC!💚🌍Today the TSC community are coming together to raise awareness of TSC and advocate for it's support and treatment. Join us in sharing your experiences and knowledge of TSC! #TSCglobalday#United4TSC
Today marks #RareDiseaseDay in which we are raising awareness of the 300 million poeple worldwide living with a rare disease. Share your story to help us advocate for equitable access to diagnosis, treatment and care for those with rare diseases! #TuberousSclerosisComplex 💚💜
It’s #InternationalEpilepsyDay! TSC-related epilepsy is rare and complex, but everyone with epilepsy faces many similar challenges. That's why we’re pleased to be part of the UK Rare Epilepsies Together network, one of the ways that we help people with TSC-related epilepsy.
Do doctors always know best?
Experts have called for more attention to be given to patients’ ‘lived experiences’ after research found multiple examples of patient reports being under-valued.
@kingsioppn@Cambridge_Uni
https://t.co/so0Ix1UMFX
💡Want to know what the TS2000 Team have been up to since 2001?
📹Check out this snippet of our new video detailing how the TS2000 Study is helping those with TSC and what we are working on in phase 4.
To see the full video -> https://t.co/zN1Eq8nNmc
#TuberousSclerosisComplex
The TS2000 study is the first study to map the impact of TSC from birth to adulthood. The next phase of the study is about to soon begin, which will explore if a new app can help monitor social wellbeing and quality of life!
https://t.co/8u3KLwgsDV
The Early Development in Tuberous Sclerosis (EDiTS) Study is recruiting young scientists to help us research development and behaviour. 🧠 If you have a child aged 3-5 years and want to contribute, check out our website today to learn how to get involved! https://t.co/QEQOvOMTTO
The new TS2000 website is now live! Click here for news from the previous phases of the study and information about the new phase 4! https://t.co/IWjnvGvOMU
🗣 It's Global TSC Awareness Day 2023 and Mental Health Awareness Week 2023. Around the globe, activities will cover the 1 million people with TSC and the 1 billion with mental health challenges.
🤝 All this week we're highlighting TSC and it's impact on mental health.
History makers 💪
Today, the #Lionesses have achieved their landmark legacy goal: for every girl in England to be given equal access to football and school sport.
#LetGirlsPlay | #IWD2023
Today is Rare Disease Day and it’s a day to raise awareness for the 300 Million people in the world with over 6000 rare diseases.
If you or a loved one have a rare disease write it in the comments and make it seen.
#RareDisease#RareDiseaseDay#RareDiseaseDay2023
Another busy day in the ART offices today: two ART-CARMA virtual assessments, 2h virtual lecture on ART research programme to psychiatrists at the Shenzhen Kangning Hospital in China and brilliant research group presentations by @WakahoHayashi and @KateFifield2 🌟
📣 Fully-funded @lissdtp PhD!
Interested in early-life predictors of educational outcomes for children with TSC/complex SEND? Join an exciting project co-supervised by @JoVanHerwegen and partnered with @UKTSA, working with @EDiTS_Study families. More info👇https://t.co/Z2JYsPQUZD