We are a charitable foundation promoting research into CASK gene mutations and associated neurological conditions in hope of finding therapies and treatments
England, United Kingdom
Joined June 2023
- Tweets465
- Following323
- Followers151
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CASK Research UK retweeted
Thank you to @EpilepsyInst for this feature. We need to do more for the #RareEpilepsy community and looking forward to exploring how the Neurodevelopment Task Force will come together to tackle this challenge head on.
.@Dr_FelixChan is a co-lead for the Institute’s Neurodevelopment strategic research theme. In this feature, Felix discusses the work of the theme and how the #ChanLab is investigating rare genetic epilepsies to one day develop new epilepsy treatments: epilepsy-institute.org.uk/er…
CASK Research UK retweeted
I am delighted to share with you the current spread of genes in the GenROC cohort in a novel family friendly cosmic format...the bigger the planet the more people in our cohort. Credit for the coding goes to talented Dan Collins (see more in next post). Which do you prefer?
CASK Research UK retweeted
Yesterday was spent at the launch of the Bristol Neurodevelopmental Hub.
I was given the opportunity to present CASK to a crowd of forty scientists, all working in the neurodevelopmental/neuroscience arena.
Thanks to Dr Amin and Prof Hodge for creating this initiative.
CASK Research UK retweeted
"Evie is defeating the odds" 🫶
This week, the #BigLifeFix team meet a brave young girl named Evie - who has a very rare condition called MICPCH.
Big Life Fix | Wednesday at 9.35pm | @rteplayer
CASK Research UK retweeted
So proud of the work that awesome graduate student @CasianaGonzalez is doing toward gene modification for #cask -related disorders. She is presenting her promising work in the @FinkLab this morning at our annual @UCDavisCTSC Scholars Symposium. 🎉
CASK Research UK retweeted
Check out CASK Research UK 's first ever documentary!
Through candid interviews and expert insights, 'Life with CASK' shines a light on CASK gene disorders - a group of ultra-rare neurological diseases caused by mutations in the CASK gene.
Watch now: 👇
ow.ly/yTRe50QQ6eM
CASK Research UK retweeted
Please vote for my little dude!! Help us raise awareness for genetic testing for those with cerebral palsy!
You don't have to input any info - just click on the heart and vote - PLZ share!
#CTNNB1 @GlobalGenes @ctnnb1cc
JOY-riding cprn.org/contestants/joy-rid… cprn.org/
CASK Research UK retweeted
Today is World Rare Disease Day - a day for coming together to raise awareness for all rare diseases
We’re so proud to be part of the UK Rare Epilepsies Together network
See ukret.co.uk/
#RareDiseaseDay #ShowYourStripes #StrongerTogether
CASK Research UK retweeted
#RareDiseaseDay an exclusive chance to spk with Andrew Stephenson Minister for Health and Secondary Care about rare epilepsies.A valuable opportunity to come together as ‘Family of Families’ in the rare disease space
We may be rare, but together we are a formidable force for good
CASK Research UK retweeted
It's World #RareDiseaseDay – a day for coming together to raise awareness for all rare diseases. @EpilpsyInst advocates for all organisations working with rare diseases co-occurring with epilepsy. Learn about the UK Rare Epilepsies Together network here: ukret.co.uk/
CASK Research UK retweeted
Today is rare disease day. Of the ~7000 rare disorders that affect human being, less than 5% have a treatment and very few a cure. This has to change, now! rarediseaseday.org/ #RareDisease #RareDiseaseDay2024
CASK Research UK retweeted
Rare diseases are rare.
Experts in rare diseases are rarer
Finding reviewers with the knowledge and experience to understand what is meaningful to rare disease patients and families is almost nonexistent!
#RareDiseaseTruth
CASK Research UK retweeted
"Your presence here today says that you are responding to a call. A call that you have heard in your heart, that you can do something. You have the confidence, the boldness to think that you can make a difference and trust me, you can." - Frank Sasinowski, #RareDiseaseWeek2024
CASK Research UK retweeted
29th of February 2024 is International Rare Disease Day, and @whitworth_group are looking to produce a collective, crowd-generated film that captures what a day looks like for those living with rare conditions. To get involved and find out more, go to rare-d.com/rare-d-2024/
CASK Research UK retweeted
Why raise awareness? Shedding light on rare diseases is vital. Limited healthcare knowledge leads to delayed diagnoses, while expensive treatments pose financial burdens. Advocacy can drive better resources, research, and quality of life. 💙
#RareDiseaseDay #ShareYourColours
CASK Research UK retweeted
I'm thrilled to be bringing this project to light for CASK Research UK. I know that this documentary will help raise much-needed funds for an underfunded rare genetic disorder. Big pharma is not interested due to the low number of those affected; the numbers just don't add up for them! Please give @CASKResearch a follow and visit their website caskresearch.org/ to show your support.
We are thrilled to share that New Paradigm Media Group has teamed up with CASK Research UK @CASKResearch to produce an impactful documentary aimed at raising awareness and much-needed funding for CASK-related gene disorders.
CASK Research UK retweeted
We are thrilled to share that New Paradigm Media Group has teamed up with CASK Research UK @CASKResearch to produce an impactful documentary aimed at raising awareness and much-needed funding for CASK-related gene disorders.
CASK Research UK retweeted
This #InternationalEpilepsyDay, I am so heartened to see so many shared posts by members of the #UKRET network. I firmly believe that the best way to advance research into epilepsy is by partnering up and coming together to solve the complex nature of rare epilepsies. (1/4)
CASK Research UK retweeted
Project CASK, in collaboration with Orphan Disease Center, is seeking proposals to advance research that supports therapeutic development for CASK gene disorders. Read more here: rarerevolutionmagazine.com/p…
