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Stream CAUK webinars on our YouTube channel!

In case you didn’t already know, you can stream CAUK webinars at your leisure via our YouTube channel!

We’ve recently uploaded our Youtube channel with multiple recordings from this summer’s CAUK Annual Forum.  You can now enjoy a range of lectures by expert guest speakers from around the world on a number of cavernoma-related topics.  

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Updated guidance from DVLA on driving & cavernoma

Thanks to member feedback, and discussions with clinicians, it was brought to our attention that the advice DVLA’s advice to patients with cavernoma was different to it’s advice to clinicians. Earlier this year, we got in touch with DVLA to query their guidance on the rules around driving with cavernoma.  

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‘Cavernoma stories’ short films

In 2023 Cavernoma Alliance UK was approached by a filmmaker who has cavernoma, Lucy Gohm.  After her own experience with the condition, Lucy come to us in the hope that we could help her use her skills to amplify the voices of the cavernoma community by interviewing people with cavernoma and sharing their stories.  The result: two beautiful short films, featuring Emily and Sacha, and their stories of temporal-lobe and brainstem cavernoma respectively. 

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CAUK ANNUAL FORUM – this Saturday 24th June!

This year we’re really excited to be bringing you speakers from the UK and US who are global experts on cavernoma.  Whether you are newly diagnosed or have been living with cavernoma for some time, we hope you’ll find these talks interesting and helpful.

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Care Study site teams across the country have successfully recruited 57 participants for the first ever pilot #clinicaltrial for #cavernoma. There are now only 3 participants left to recruit before the end of April.

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Young Carers Action Day: Make Time for Young Carers

Today, March 15th, we come together with organisations across the country to recognise young carers.
Every day, thousands of young people across the UK help look after someone in their family who is ill, disabled or has a mental health problem or an addiction.

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Every year on the 28th of February, hundreds of organisations around the world come together to raise awareness for rare diseases, and improve access to treatment and medical representation for individuals with rare diseases and their families.  It is an opportunity to advocate for the 300 million people worldwide living with one of the 6000+ identified rare diseases, and a chance to shine a light on what it is like to live with a condition that most people have never heard of. 

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