A significant milestone indeed! #Cavernoma #CCM

Prof Rustam Al-Shahi Salman @BleedingStroke

2 weeks ago

A significant milestone indeed! #Cavernoma #CCM

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💦 It's taken >25y of research to complete the @NIHRresearch CARE pilot trial for #cavernoma 📕 Read the results here thelancet.com/journals/laneu… 📽️ Watch the plain language video here cavernoma.org.uk/care-study/ 🤩 @TheLancetNeuro @The_SBNS @cavernomauk @JuliaWadeBris @EdinUniECTU

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To all TBI survivors. #stroke #strokesurvivor #TBI #TBIsurvivor #lifeafterstroke #lifeafterTBI #cavernoma #brainsurgerysurvivor #newlifenewyou #neurorehab #lifeafterstroke #lifegivesyoulemons🍋 #lifegivesyoulemons

🧬Familial Cavernoma - Webinar “Predicting familial cavernoma progression using biomarkers” On 24th April at 7pm. More info in CAUK's post👇 #Cavernoma #FCCM @cavernomauk

Cavernoma Alliance UK (CAUK) @cavernomauk

2 weeks ago

🧬Familial Cavernoma - Webinar “Predicting familial cavernoma progression using biomarkers” On 24th April at 7pm. More info in CAUK's post👇 #Cavernoma #FCCM @cavernomauk

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🙂 Let's Catch Up Come join us Thursday at 7pm 🕖 via Zoom. 📌For the Zoom link, please send us a private message or email [email protected] #Cavernoma #CavernomaCommunity #CavernomaIreland #LoveYourBrain

An interesting read on antithrombotic therapy and #cavernoma.  Traditionally clinicians have been cautious about its use. Recently researchers have begun cautiously asking if antithrombotic therapy may actually be beneficial pubmed.ncbi.nlm.nih.gov/38471833/

Lots of interesting recent papers on cerebral cavernous malformations! #cavernoma #cavernomas #CCM @cavernomauk @EuropeCavernoma @TheCavernomaSoc

Would you like to know more about oral contraception, HRT and Cavernoma? There’s still time to register for our webinar this Thursday the 28th March at 19:30 GMT by going to: bit.ly/HormoneTherapy… #HormoneTherapy #cavernoma #CCM

Significantly more than half of stroke survivors report depressive symptoms within 5 years and that may well be an underestimate. These data seem likely applicable to those suffering #bleeding #stroke as well don’t they? #AVM #aneurysm #cavernoma thelancet.com/journals/lanep…

The findings will be published in a report in June. More info 👉 cavernoma-europe.org #Cavernoma #Kavernome #Cavernome #CavernousMalformation #CCM #FCCM #CavernomaAwareness #EuropeanCavernomaAlliance @rareireland @RareDiseasesIE @NI_RDP

📣Your Voice Matters - Let's Make Change Happen Please complete the European Cavernoma Patient Survey. Thank you. bit.ly/EuropeanCavern… Or Scan the QR Code in poster. This anonymous survey aims to identify the unmet needs of #cavernoma patients in Europe. @EuropeCavernoma

We’re really pleased to share our new #cavernoma ‘Key Facts’ poster. We would absolutely love it if you can print and display, helping to raise much needed awareness. To download your copy, go to bit.ly/CAUKKeyFactsPo…. #BrainAwarenessWeek.

Thank you @sixers @PennMedicine for highlighting @Dflanns story @PennNSG @PennCerebrovasc and to raise awareness for brain vascular malformations #CCM #CavernousMalformation #cavernoma

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“People who speak more than one language or dialect have different linguistic, cognitive, and neural architectures than people who speak only one language,” Viorica Marian euronews.com/culture/2023/0… #BAW2024 #WorldLanguages #LoveYourBrain #Cavernoma #BrainAwarenessWeek2024

'Whilst this is early stage research, with a 10 to 15 year road map before gene therapy might be available for patients, it marks an important milestone for #cavernoma research. This is the first gene therapy research to be taking place in the UK for brain cavernoma.'

Part of 1 in 625 #Cavernoma #BrainAwarenessWeek

Cavernoma Alliance UK (CAUK) @cavernomauk

2 months ago

Part of 1 in 625 #Cavernoma #BrainAwarenessWeek

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This week is #BrainAwarenessWeek a global campaign to increase public awareness of the progress and benefits of brain research. This is an important week for Cavernoma Alliance UK given our vision find a cure for #cavernoma affecting 1 in 625 people in the UK.

Cavernoma stories bring to life the lived experiences of our #cavernoma community. This week we feature Linda’s story on our Facebook page as she bravely shares her experience and tells us to “Live life to the fullest and focus on the positive” facebook.com/CavernomaAllia…

This Friday is International Women’s Day #IWD2024 #inspireinclusion. Our best wishes go to all the amazing women and girls within our #cavernoma community of all abilities and disabilities who constantly inspire us with their strength and courage.

With just over 1 week to go we’re really looking forward to our #BrainAwarenessWeek meet-ups taking place 11th - 17th March at 10 UK wide venues. 🧠 Not yet registered? There’s still time! ⏰ Sign-up here 👉 bit.ly/RegistrationFo… #cavernoma #cauk #support

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