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

We would like to say a huge thank you to Cambridge Stroke 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

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 RTI Health Solutions bit.ly/mmind079

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/…

#rarediseaseday2019 #RareDisease #Cadasil #Stroke #raisingawareness tag us in your rare disease and we will RT you. Please RT #SpreadPositivity Rare Disease UK Rare Disease Day

Please RT our #RareDisease poster for #RareDiseaseDay #CADASIL #Stroke #DefyTheOdds Linda Lusardi Stroke Association Cambridge Stroke Simon Cowell Peter Egan Andrew Marr

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

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 ⁦European Academy of Neurology⁩ Conference in Oslo June 29-July 2 ⁦ISGC⁩

With thanks to Billie at CTWHH for sharing this latest newsletter with us. myemail.constantcontact.com/CADASIL-News-a…

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.php

Shocking! you.38degrees.org.uk/petitions/just…

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/20038723068573…

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?stor…

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

The Rare Diseases website below has two items of potential direct interest. Firstly, an item asking for user views and/or... mailchi.mp/raredisease/ra…

Rare Disease UK: alert cards, media opportunity and more! mailchi.mp/raredisease/ra…

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 ⁦British Heart Foundation⁩

Our #CADASIL #telemedicine service is in this weeks Cambridge Independent ! ⁦Cadasilsupportuk⁩ ⁦Cam Neuroscience⁩ ⁦The Evelyn Trust⁩ ⁦Cambridge University Hospitals NHS⁩

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!

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