As we mark #sicklecellawarenessmonth, we highlight the need for greater investment into sickle cell to improve data, increase clinical trials and for more affordable drugs available to people living with sickle cell
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Rutendo-rm.bsky.social
52 posts
Rutendo-rm.bsky.social
@Rutendo_rm
Epidemiologist at @imperialcollege interested in sickle cell research, health inequalities, infections and dementia. Previously at @LSHTM
Katılım Ocak 2024
89 Takip Edilen30 Takipçiler
Our new @TheLancetHaem article highlights UK research and funding disparities in #sicklecell across multiple indicators. Sickle cell had the lowest research and charity funding per person, lowest % of clinical trials and drug approvals bit.ly/4gusj5H @FredPiel @NHS_RHO
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🔔Our new @TheLancetHaem article highlights research and funding disparities in sickle cell. Compared to cystic fibrosis and haemophilia, sickle cell had the lowest research funding per person, lowest % of clinical trials and NHS drug approvals in the UK bit.ly/4gusj5H
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🩸 Help Shape an Exhibition About Sickle Cell! We’re inviting @NHSBarts patients with sickle cell to join a Patient Committee for Our Journey, Our Story, soon to be displayed at Royal London Hospital.📩 Apply by 11 Sept: Heritage.Project@sicklecellsociety.org
#SickleCell
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@SickleCellUK Thank you to everyone who has expressed interest in our study!
We've now closed the survey after receiving an incredible number of responses. We are therefore no longer recruiting for our Patient and Public Involvement group — but we truly appreciate your support and enthusiasm!
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Help shape sickle cell & infections research! 🧪We’re looking for people 18+ living with or caring for someone with sickle cell to join our patient & public involvement group.
🔍 Scan the QR code or visit: bit.ly/3JeARkF
📧 r.muzambi@imperial.ac.uk
#SickleCell #Research
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In April, I requested ethnicity data on blood donations and deferrals. Months later, I’m still waiting for the full set.
With just 50% of sickle cell patients getting the Ro matched blood they need, we need answers to understand why Black donors are being turned away.
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And here’s a link to the @NHS_RHO report cited in the question on equitable funding for sickle cell research and workforce capacity: nhsrho.org/wp-content/upl…
Sickle Cell Society@SickleCellUK
Parliamentary Update.On 22 July, Kate Osamor MP raised a question on funding for sickle cell research & workforce. The Minister reaffirmed NIHR welcomes funding bids for all health areas incl Sickle Cell.Contains Parliamentary info licensed under the Open Parliament Licence v3.0
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Today, on #SickleCellDay, we launch our new report on inequalities in sickle cell care – in collaboration with @imperialcollege and the @SickleCellUK. It outlines disparities in sickle care compared to other rare conditions and identifies opportunities for improvement. 1/9
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Yesterday, our comparative sickle cell work with the @NHS_RHO and @SickleCellUK highlighting disparities in funding and support for sickle cell was published on #WorldSickleCellDay. Read more about the report in our blog @FredPiel
blogs.imperial.ac.uk/uk-sickle/2025…
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We’re pleased to launch this important report - a report that highlights the challenges related to sickle cell care, and offers evidence-based solutions for meaning transformation.
In this context, the report is more than just a call to action - it’s a roadmap for change!
NHS Race & Health Observatory@NHS_RHO
Today, on #SickleCellDay, we launch our new report on inequalities in sickle cell care – in collaboration with @imperialcollege and the @SickleCellUK. It outlines disparities in sickle care compared to other rare conditions and identifies opportunities for improvement. 1/9
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Genomics in Health Panel 3: Genomics & Haematology: Sickle Cell Disease
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Join us TOMORROW at the World Health Assembly side event for a series of panels on "Genomics in Health: Advancing Science, Equity, & Investment through Global Health Governance"
Register to attend online: bit.ly/4j8cEIH
Learn more about the panels below👇
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Bridging Patients & Research: Read our latest #sicklecell blog post out now. @FredPiel @NHS_RHO blogs.imperial.ac.uk/uk-sickle/2025…
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Pleased to share our first blog post of 2025! Featuring the latest update on our @NHS_RHO work, upcoming #sicklecell patient engagement events and more. @FredPiel blogs.imperial.ac.uk/uk-sickle/2025…
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"True equity across ethnic groups will take many years to achieve. But the NHS landscape has changed beyond recognition, and action to root out racism and discrimination is stronger than ever"
@RaoMala on racism in medicine five years on from @bmj_latest special issue
The BMJ@bmj_latest
Has racism improved in the NHS and UK medicine? @RaoMala sees shoots of hope, but @Voa1234 argues that any progress still has a long way to go bmj.com/content/388/bm…
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Health is a window through which we can view the workings of society.
A reminder in this @bmj_latest article of the impact structural racism has on health and on the social determinants of health.
@MichaelMarmot @ProfKevinFenton @doctorcordelle
bmj.com/content/387/bm…
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🔔Sharing our last blog post of 2024! Our deepest thanks and appreciation for your incredible response and effort in participating and disseminating our #sicklecell survey @NHS_RHO @FredPiel @SickleCellUK blogs.imperial.ac.uk/uk-sickle/2024…
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Thank you Brendan Foster for these great photographs of the #InvisibleWarrior team in action at the #ImperialLates @imperialcollege. Our stand to raise awareness for #SickleCell was visited by many interested visitors, thank you for all your questions and interest in our work!
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Experiences of people with sickle cell are key to our comparative research programme with @imperialcollege. We encourage you to participate in this short survey, or to share the survey with others who may be eligible: imperial.eu.qualtrics.com/jfe/form/SV_bH…
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