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.
Halifax
Joined June 2018
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Such a great conference. Thanks ever so much to all the speakers
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
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Our #CADASIL #telemedicine service is in this weeks Cambridge Independent ! @Cadasilsupport1 @CamNeuro @TheEvelynTrust @CUH_NHS
Cadasilsupportuk retweeted
Out now! Download the official poster for #RareDiseaseDay 2020 now available via rarediseaseday.org/downloads. Share it today to show your support for the rare disease community!
Cadasilsupportuk retweeted
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
Rare Disease UK: alert cards, media opportunity and more! mailchi.mp/raredisease/rare-…
The Rare Diseases website below has two items of potential direct interest. Firstly, an item asking for user views and/or... mailchi.mp/raredisease/rare-…
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... youtu.be/rjwWBahKQjk
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 facebook.com/story.php?story…
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... facebook.com/200387230685732…
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... cambridgestroke.com/cadasil.…
With thanks to Billie at CTWHH for sharing this latest newsletter with us. myemail.constantcontact.com/…
Cadasilsupportuk retweeted
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
#RareDiseaseDay #RaisingAwareness #CADASIL #Stroke #migraines #depression share the rare diseases to help raise awareness x
Please RT our #RareDisease poster for #RareDiseaseDay #CADASIL #Stroke #DefyTheOdds @lusardiofficial @TheStrokeAssoc @CamStroke @SimonCowell @PeterEgan6 @AndrewMarr9
#rarediseaseday2019 #RareDisease #Cadasil #Stroke #raisingawareness tag us in your rare disease and we will RT you. Please RT #SpreadPositivity @rarediseaseuk @rarediseaseday
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... my.blood.co.uk/KnowledgeBase…
Cadasilsupportuk retweeted
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
bit.ly/mmind079
We would like to say a huge thank you to @CamStroke for giving UK Cadasil patients hope 💟
In June 2017 the #cadasilconference was launched! In January 2019 the Cadasil Support Studentship UK will be launched at Cambridge University 👩🏻🎓👨🏽🎓#DEFYTHEODDS #watchthisspace
Cadasilsupportuk retweeted
Our report 'Living with a rare condition: the effect on mental health' showed that around half of patients and carers affected by #raredisease have never been asked about their mental health: ow.ly/gHdT30jZ256
