Jillian Hastings Ward
@jillianhw.bsky.social
'that mother' - #R4Today🎙 Patient advocate, mum and wife. Genomics fan. GRI genes. Rare disease life. Poet and photographer. MBE!
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
More than you can imagine
patient adovcate speech about life affected by a rare genetic disorder
linkedin.com
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
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
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...
phc.ox.ac.uk
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 👏 🎄
Really interesting initiative, and useful recommendations that apply to all sorts of health research 👍
![Image shows the authors' Recommendations regarding research participation [my summary follows]:
1. Researchers should come to meet the community where it is
2. Foster good experiences, build awareness, empower individuals to ask informed questions
3. Qualified and trusted healthcare professionals should tell the community about research studies
4. Provide clear and comprehensive info, making clear what the research involves
5. Keep participants updated about research findings
6. Be transparent about how physical samples will be used
7. Be transparent about what whether test results will be shared for research
8. Emphasise the benefits of research to the wider community as well as to the individual](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:ybtrgghhopv4vgm5ucuwml7f/bafkreifnuc4oap4tzbhjtg3evbhhwory5pghkavcmpytvqtfbvhxjwpeny)
Helen Ward@profhelenward.bsky.social · 2y agoAs researchers we want to make biomedical research accessible & relevant to all. Our team from Imperial worked with The Mosaic Trust and identified key issues that we need to work on with our local communities. Read the report here. spiral.imperial.ac.uk/handle/10044...
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!
Emilie Wigdor@emiliewigdor.bsky.social · 2y agoThis paper covers concepts that aren’t usually discussed in the context of rare (single-gene) conditions. We included EasyRead and lay summaries, as well as an FAQ—written with input from patients and families. Find them in Supplementary Note 1!
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 💙🩵❤️
