Via STAT : U.K. health officials and researchers try to carve a path for more individualized genetic treatments statnews.com/2024/03/21/uk-… Dr Haiyan Zhou NIHR Research Medical Research Council Rare Disease Research UK Andrew Joseph #UPNAT #raredisease #research #RareDiseaseResearch

For those who have asked for a closer view of the #UPNAT poster presented at the Rare Disease Research UK event last week, here you go! #raredisease #research #RareDiseaseResearch Dr Haiyan Zhou Alice Davidson Nick Lench Mina Ryten Carlo Rinaldi Medical Research Council NIHR Research

Tuberous Sclerosis Association GoPI3Ks (Genetic Overgrowth PI3K Support) ptenuki LAM Action Child Growth Foundation Myrovlytis Trust Epilepsy Research Institute Rare Disease Research UK please repost. thank you!

First annual conference hosted by Rare Disease Research UK was a huge success! Excellent opportunity to engage with other Nodes, and for Alice Davidson Dr Haiyan Zhou to display our #UPNAT poster. #RDRUKcon Medical Research Council NIHR Research

A huge thank you to our keynote speakers Lucy Chappell, Kath Bainbridge, Prof Brian Walker & Dr Catriona Crombie LifeArc for their insights on #MRC perspectives, UK Rare Diseases Research Framework and #rarediseaseresearchUK translational challenges at #RDRUKCon

Informative session by our CILIA-REN node john sayer on #renalciliopathies , CAPTIVATE node Alex Wimbush Victoria on MRC trial designs and Lipidomics node William Griffiths on #raredisease diagnosis through lipidomics/ metabolomics at #RDRUKCon .

The Q&A panel on stage Rare Disease Research UK
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#RareDisease #Research conference

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cc AKU Society

Rare Disease Research UK Great presentation by Victoria Homer and Alex Wimbush on projects in the MRC Innovative Trial Designs in Rare Diseases node at Rare Disease Research U.K. first conference Institute of Cancer and Genomic Sciences (UoB) Medical and Dental Research (UoB)

We're kicking off the first conference for Rare Disease Research UK ! Senior Project Manager Anna Halstead & Prof Dave Jones welcomes us to #Newcastle #RDRUKCon . Kath Bainbridge from Department of Health and Social Care is presenting the UK #raredisease framework

Rare Disease Research UK Rare Disease Research UK 1st annual conference in #Newcastle Great to see the great work, collaboration and enthusiasm of everyone in this space #RDRUKcon
Siddharth Banka Bill Newman Manchester Rare Conditions Centre

Today we're at the Rare Disease Research UK first Annual Conference #RDRUKcon , showcasing the strengths and opportunities in #raredisease research and infrastructure in the UK

john sayer gives an overview of CILIAREN at the Rare Disease Research UK conference, with exciting possibilities in partnership with collaborative cross-cutting RD nodes Medical Research Council

Thank you Prof Lucy Chappell for highlighting our We are NIHR funded project to build a patient led Rare Disease Research Network platform - “a community led approach to rare disease research’ at the Rare Disease Research UK conference today with PLRH

#RDUKcon Rare Disease Research UK
At the rare disease U.K. Conference. Lots of talk about “putting patients at the heart”. Love these illustrations from Sarah Knowles and collaborators pushing back against this narrative. Who has power when patients are “put” anywhere?

“It’s all about the impact”. Today we are at the Rare Disease Research UK 1st annual conference, exploring the rare disease research landscape & plans to connect & enhance the UK’s strengths in rare disease research #RDRUKhub Rare Disease Research UK

Delighted to hear from Kath Bainbridge from Department of Health and Social Care about the Rare Diseases Action Plan at the Rare Disease Research UK 1st Annual Conference today in #Newcastle
The importance of the Patient Voice.
Genetic Alliance UK NIHR Research Medical Research Council
rd-research.org.uk/about-us/confe…

Victoria Hedley and Kath Bainbridge lead a Q+A on the rare disease landscape in the UK at the first Rare Disease Research UK conference in #Newcastle NCL_RareDisease

Slide via LifeArc showing Rare Disease Research UK
#rdrukcon
#RareDisease #Research conference

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Really key point here at Rare Disease Research UK conference from Dr Crombie LifeArc : #raredisease proposals often score pretty well but 'lose marks' for perceived smaller impact: ending with a '7 out of 10' ... so really important to find ways to prioritise rare! #RDRUKCon

Shout out to Rick Thompson Beacon for Rare Diseases / REMEDi4ALL #DrugRepurposing Rare Disease Research UK
#rdrukcon
#RareDisease #Research conference

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