Cadasilsupportuk

CADASIL Support UK is a Registered Charity established in Nov 2017 . Our aim is to raise awareness & provide a network of support for patients, family & carers.

[Cadasilsupportuk @Cadasilsupport1]

@emmerdale @CamStroke don’t miss an opportunity to highlight #cadasil as a #raredisease https://t.co/KnES2fT9ed #cadasil #misdiagnosis #tia #stroke #emmerdale #marlon

[Cadasilsupportuk @Cadasilsupport1]

Such a great conference. Thanks ever so much to all the speakers

[Cambridge Stroke @CamStroke]

Great turnout - three figures- for our annual Cambridge CADASIL meeting. Thanks to all attendees and for the many questions. Special thanks to speakers Heather Pierce, Bernard Cho and the inspiring Sophie Jones and esp ⁦@Cadasilsupport1⁩ ⁦@CUH_NHS ⁦@ACTcharity⁩

[Cambridge Stroke @CamStroke]

Our #CADASIL #telemedicine service is in this weeks Cambridge Independent ! ⁦@Cadasilsupport1⁩ ⁦@CamNeuro⁩ ⁦@TheEvelynTrust⁩ ⁦@CUH_NHS⁩

[Rare Disease Day @rarediseaseday]

Out now! Download the official poster for #RareDiseaseDay 2020 now available via https://t.co/ZzrcyoRCDd. Share it today to show your support for the rare disease community!

[Cambridge Stroke @CamStroke]

Jess Walsh presenting poster on BBB permeability and neuroinflammation in small vessel disease at Cambridge Cardiovascular Annual meeting - a very impressive range of exciting CVS research including stroke and vascular dementia ⁦@Cambridgecardio⁩ ⁦@TheBHF⁩

[Cadasilsupportuk @Cadasilsupport1]

Rare Disease UK: alert cards, media opportunity and more! https://t.co/KoJDQ2DkQd

[Cadasilsupportuk @Cadasilsupport1]

The Rare Diseases website below has two items of potential direct interest. Firstly, an item asking for user views and/or... https://t.co/KoJDQ2DkQd

[Cadasilsupportuk @Cadasilsupport1]

For people with CADASIL a stroke is often the start of being diagnosed. This new advert by the #strokeassociation is part of the #rebuildinglives campaign and shows the imapct a stroke can have.

CADASIL is a rare disease and having a stroke is... https://t.co/A25MRc9aMG

[Cadasilsupportuk @Cadasilsupport1]

Want to say a massive thank you to tho absolute legend! Karen has raised money for u before and we can’t thank her enough xxx https://t.co/ymPe1EUl0P

[Cadasilsupportuk @Cadasilsupport1]

On 7 April this absolute weirdo is running the Manchester marathon which is a ridiculous 26.2 miles.

Now I call her a weirdo because I’m jealous that I couldn’t run or even walk 26.2 metres

Karen Cooke you... https://t.co/SzUzGjZ4oG

[Cadasilsupportuk @Cadasilsupport1]

Shocking! https://t.co/NlCXlssqBV

[Cadasilsupportuk @Cadasilsupport1]

Cambridge CADASIL meeting 2019

The next Cambridge CADASIL meeting will be held on Monday 10th June 2019 10.30am-4.30pm at the Clifford Allbutt Building Lectrure Theatre at Addenbrooke's Hopsital, Cambridge.

This years meeting will... https://t.co/Xp5JftBJSS

[Cadasilsupportuk @Cadasilsupport1]

With thanks to Billie at CTWHH for sharing this latest newsletter with us. https://t.co/rVMC7ZuiMW

[Cambridge Stroke @CamStroke]

Very interesting meeting discussing European Academy of Neurology guidelines for diagnosis and management of #monogenic #stroke. A rapidly evolving field. Hopefully they’ll be ready to present at ⁦@EANeurology⁩ Conference in Oslo June 29-July 2 ⁦@StrokeGenetics⁩

[Cadasilsupportuk @Cadasilsupport1]

@rarediseaseday #raisingawareness for #CADASIL

[Cadasilsupportuk @Cadasilsupport1]

#RareDiseaseDay #RaisingAwareness #CADASIL #Stroke #migraines #depression share the rare diseases to help raise awareness x

[Cadasilsupportuk @Cadasilsupport1]

Please RT our #RareDisease poster for #RareDiseaseDay #CADASIL #Stroke #DefyTheOdds @lusardiofficial @TheStrokeAssoc @CamStroke @SimonCowell @PeterEgan6 @AndrewMarr9

[Cadasilsupportuk @Cadasilsupport1]

#rarediseaseday2019 #RareDisease #Cadasil #Stroke #raisingawareness tag us in your rare disease and we will RT you. Please RT #SpreadPositivity @rarediseaseuk @rarediseaseday

[Cadasilsupportuk @Cadasilsupport1]

WHY CAN'T PEOPLE WITH A DIAGNOSIS BE A BLOOD DONOR? 💉

This is a question we have been asked so many times as even long term donors are told they are no longer allowed, once being given a diagnosis of CADASIL. This is even if a... https://t.co/BPeGwiHRaZ

[Genomenon @genomenon]

Today's #MastermindFind: #MRI for early assessment of late-onset #genetic #leukoencephalopathies is extremely valuable, as demonstrated by the pedigree and genotyping of a Canadian family with a #NOTCH3 #mutation:

@cadasilsupport1
@cadasil_assn
@RTIHS

https://t.co/YtAJ1mot6g