🧬 On #RareDiseaseDay, we're taking further action to improve the lives of people with rare conditions. This includes: 🧬 research to help speed up diagnosis and treatment 🧬 specialist care as close to home as possible Read our action plan: gov.uk/government/pub…

What is a variant of uncertain significance? Helen Brittain explains what significance means in relation to gene variants 🧬 Tune in to our latest podcast short, which explains variants of uncertain significance in less than 10 minutes. 🎙️Listen here: ow.ly/5gLf50QMmZz

Happy #InternationalWomensDay Great to be working with these two, and many more, advocating for countless other mothers, daughters, sisters and everyone else touched by #Genomics Helen White Rebecca Middleton

The latest print edition of NeuroNews can now be viewed in full online! Our March 2024 issue features a "major shift" in SDH treatment, highlights from #ISC24, an in-depth interview with Michihiro Tanaka, and much more #Neurointervention #Neurovascular neuronewsinternational.com/neuronews-issu…

Thank you NeuroNews for sharing our story & mission to collaborate with clinical partners to build better support for patients/families with familial aneurysms. You've helped throw a spotlight on a condition that for too long has been surrounded by fear &silence HBA Support

🧠 Pleased to announce that next week, at the Annual Cell and Gene Therapy Conference, our Chief Executive Rebecca Middleton will be talking patient involvement with rare disease and genomics industry leaders. Economist Impact #HereditaryBrainAneurysms #BrainAneurysmAwareness

Day one underway and straight into future proofing regulatory pathways Economist Impact events HBA Support

Second day of the Economist’s Cell and Gene Therapy Conference is underway with opening marks from Andrew Stephenson MP, UK Health Minister. Looking forward to more great discussions today. #EconCellGeneTherapySummit HBA Support

Prof. Matt Brown, CSO from Genomics England talking about breaking down silos, the Rare Disease Launch Pad and the need to develop specialist centres to collect data, support patients and streamline regulatory processes #EconCellGeneTherapySummit

Great afternoon discussing how to give patient their voice in Cell and Gene Therapies. Proud to be representing Genomics England and HBA Support Thank you Michelle Salter for moderating our session with Chris Fearne Virginie Hivert and Alastair Kent #EconCellGeneTherapySummit

Ready for the week ahead! Time out to build knowledge and skills EURORDIS-Rare Diseases Europe HBA Support

Huge congratulations Jillian Hastings Ward very well deserved 🧬 I’m glad your service has been recognised. Enjoy this moment 🙌🏻

From day one we have been on the most incredible journey on behalf of our patient community. What a honour it’s been. So proud of what Jillian Hastings Ward and I have achieved. The best of luck to Adam and Helen as they take our work forward 🙌🏻 Genomics England

Calling all participants of the National Genomic Research Library! Have you used the Genomic Medicine Service, are you part of the 100k Genome Project - and do you have an interest in placing patients at the heart of research, then the below opportunity could be for you! ⬇️⬇️

🌟 Groundbreaking research made possible by all those with bowel cancer who joined the 100,000 Genomes Project! Their data has transformed understanding of bowel cancer, paving the way for more effective treatments and better outcomes. Huge thanks to them! 🙏

Thank you for posting RARE Revolution Magazine. If you’re interested in finding out more, please drop me a line. We hope this will be a forum and community to share ideas, research, innovation and most importantly the voice of vascular patients. Come and help us shape the network! ⬇️

❗️Brain aneurysms are more common in women than men. Rebecca Middleton, founder of HBA Support, was diagnosed in 2015 and has since undergone treatment. She speaks to Nuala McGovern about the hereditary impact of this on both her and her family ⬇️

Thank you BBC Woman's Hour for sharing my story, raising awareness of familial brain aneurysms and HBA Support Women are more likely to have a brain aneurysm and the risks increases when you’re post menopausal. Excited about the ROAR Study led by Diederik Bulters to unpick why 🧬

Thanks to BBC Woman's Hour for allowing Rebecca to share her story about aneurysms and the impact on her family. Thanks to @bbcnuala for her sensitivity today. bbc.co.uk/sounds/play/m0… We're here for anyone affected by brain aneurysms with hereditary links. hbasupport.org

Thank you NeuroNews for sharing news about HBA Support exciting plans for new patient guides and support for patients and their families. Excited for the projects ahead 🙌🏻 get in touch if you would like to find out more 📣