It's #RareDiseaseDay2025 - our community is growing every year, as new genetic disorders are discovered. It's more important than ever for decision-makers to understand what life is like for people like us. www.linkedin.com/pulse/more-t... #GRIN1 #GRIA #GRID #GRIK

It's not "Breaking News" now, since it was announced by NIH yesterday. But it is breaking....... washingtonpost.com/health/2025/...

"Society should drive science, not vice versa" - Sim Baker and Sharon Jones, Genomics England: engagement, inclusion and ethics are the key ingredients #FOG25

Good to hear Baroness Merron, DHSC Minister, confirming that #genomics is "at the core" of the forthcoming Life Sciences Sector Plan #FOG25

The Rosamund Snow Scholarship deadline is extended to 14 Feb 2025! This unique #DPhil scholarship empowers patients to lead research that transforms healthcare using their lived experiences. Learn more: www.phc.ox.ac.uk/news/rosamun... #Scholarships #PatientLedResearch

Off to #FOG25 ! Really looking forward to hearing about some of the amazing developments in #genomics over the past year, catching up with some friendly faces 👋 AND sharing more of my #poems and new #postcards exploring parent/family perspectives of #RareDisease life 🙌

So pleased to hear that the wonderful 🛌 #DuvetKnowItsChristmas is also migrating over here. Surely one of the best things on social media at this time of year! Bravo @rhodri.biz 👏 🎄

This week I received an #MBE for 'services to patients and participants in UK #genomics'. A wonderful treat AND a reminder that there's still much to do in advocating for people with #rare gene disorders. Grateful to so many people for this journey so far; here for more in 2025! Do get in touch...

Really interesting initiative, and useful recommendations that apply to all sorts of health research 👍

This was an important new step in making scientific research findings more accessible to the people whose data was powering the discoveries 🏆 It takes time, but it's so valuable for all involved. Bravo!

Enjoying the Freshers Week energy over here... hello 👋 I'm new too... 🤓 keen to keep up to speed with rare disease / genetic discoveries, especially relating to GRIA GRID GRIK and GRIN genes 🧬 as I'm a co-founder of www.gri-uk.org 💙🩵❤️