Jillian Hastings Ward

More than you can imagine patient adovcate speech about life affected by a rare genetic disorder

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/...

Picture of Sim and Sharon at a lectern with display behind showing Engagement, Inclusion and Ethics as the 3 key ingredients of achieving good practice

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

Baroness Merron at the FOG lectern

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

Rosamund Snow Scholarship deadline extended to 14 February: Empowering patient-led research The Nuffield Department of Primary Care Health Sciences has extended the deadline for applications to the Rosamund Snow Scholarship for Patient-Led Research to 14 February 2025. Recent recipients of t...

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

Helix of Love

Ooh thank you Nicky! I think the Poetry Gallery (just beyond the Tree of Life cafe) is a good bet - although they are always available online as well:
issuu.com/b-s-m-s/docs...
😁 ...and we are adding postcards to the mix this year as well. Do write one back if you have time! 🙏

Yorkshire Tea, in an LNER branded paper cup, on a train table

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 👏 🎄

Thank you Nicky!

Me in a black hat and green coat, outside Buckingham Palace, smiling broadly

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...

Thank you Rikke! 😊

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 💙🩵❤️