Jillian Hastings Ward
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jillianhw.bsky.social
Jillian Hastings Ward
@jillianhw.bsky.social
170 followers 180 following 12 posts
'that mother' - #R4Today🎙 Patient advocate, mum and wife. Genomics fan. GRI genes. Rare disease life. Poet and photographer. MBE!
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jillianhw.bsky.social
"Society should drive science, not vice versa" - Sim Baker and Sharon Jones, Genomics England: engagement, inclusion and ethics are the key ingredients
#FOG25
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
January 29, 2025 at 5:16 PM
jillianhw.bsky.social
Good to hear Baroness Merron, DHSC Minister, confirming that #genomics is "at the core" of the forthcoming Life Sciences Sector Plan
#FOG25
Baroness Merron at the FOG lectern
January 29, 2025 at 10:16 AM
jillianhw.bsky.social
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 🙌
Yorkshire Tea, in an LNER branded paper cup, on a train table
January 28, 2025 at 2:15 PM
jillianhw.bsky.social
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...
Me in a black hat and green coat, outside Buckingham Palace, smiling broadly
November 30, 2024 at 7:18 PM
jillianhw.bsky.social
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
November 21, 2024 at 1:27 PM