Today is World #AlströmSyndrome Day!

Celebrate the Birthday of Carl Henry Alström who first discovered the Syndrome.
Why not donate to one of the rarest conditions in the world, and help support families with this complex condition.

justgiving.com/alstromsyndrom…

Thankyou Jenny Prigg and all rare disease team at UoB and our partner hospitals BWC NHS Trust University Hospitals Birmingham Birmingham Health Partners and patient support groups Alström Syndrome UK Wolfram Syndrome UK Bardet-Biedl Syndrome UK (BBS UK) this award will be a step change for West Midlands rare disease translational research

LifeArc CEO Stephane Maikovsky announces launch of Rare Disease Translational Research Centres, including consortium Uni Birmingham, Belfast and Newcastle to speed up delivery of clinical trials LifeArc @unibirm_MDS Institute of Cancer and Genomic Sciences (UoB) Genetic Alliance UK

Just heard Dr Lauren M Quinn present at #DUKPC on elsadiabetes, a project #screening children for #Type1Diabetes which is co-funded by JDRF UK and Diabetes UK Research 🤝💙

Learn more and sign up: jdrf.org.uk/research_proje…

Really helpful aide memoir when talking with children with diabetes from diverse populations - thanks May! Prof May Ng OBE 吳 诗 梅 #DUKPC

#DUKPC great talk by Dr Jess Wheeler highlighting inequalities in diabetes outcomes for children of different heritage

How do we improve outcomes for children & young people from Black and ethnic minority backgrounds? Session led by ⁦⁦Barnardo’s⁩ with their young ambassadors and ⁦NHS Race & Health Observatory. #KFTimeForAction

On #IWD we celebrate our Institute Director Pam Kearns. Her extensive research into children’s #cancer research & fundraising activities have been praised by Little Princess Trust Birmingham Cancer Research UK Clinical Trials Unit Medical and Dental Research (UoB) rb.gy/ds2wo0

#REMEDi4ALL
Helpful talk from Catriona Crombie of LifeArc about upcoming research funding opportunities for translational research, and repurposing toolkit-LifeArc - available via their website

#REMEDi4ALL
Drug repurposing conference building an international multidisciplinary community

AS Global Conference Films and Graphics are out NOW!

We hope you all enjoyed the AS Global Conference in January as much as we did. Don't worry if you missed any of the sessions, as you can now find them all on the website.

#AlstromSyndrome

alstrom.org.uk/as-global/#ASG…

Our #RareDiseases24 campaign is here 🧫🔬
Grab your copy in today's The Guardian and online at bitly.ws/3ecCm featuring Nick Meade with Genetic Alliance UK

#RareDiseaseDay #geneticresearch #healthcare

#RareDiseaseDay #unibirm_MDS Wolfram Syndrome UK Birmingham Health Partners #IcgsUob BWC NHS Trust Birmingham making a real-world impact on rare diseases, with a multi-facility infrastructure for research to help find new treatments for PLWRC healthawareness.co.uk/rare-diseases/…

‘Survival capitalism’ and the Big Bang doi.org/10.7765/978152…
My book, 'Survival capitalism' and the Big Bang is now published with Manchester University Press. New insights into #Thatcherism and the 1980s financial revolution. Fascinating oral histories with government and City insiders.

Meet the rare disease path speakers at #iDR24 ! 🗣️

Tim will discuss his experience searching for a repurposing candidate through to the closing stages of a clinical trial, without support from pharma.

Find out more:

ow.ly/r3CO50QHTsh

Join experts at #iDR24 discussing the present and future of #DrugRepurposing , including:
👉Getting repurposed drugs to patients
👉The challenge of translation
👉The LoDoCo case
👉Challenges & opportunities
Learn more & book tickets here:
remedi4all.org/international-…

A great opportunity to engage in the discussion about the use of WGS for newborn screening in the NHS Genomic Medicine Service

Congratulations to our colleague Prof Sara Kenyon (Sara Kenyon) for being awarded a prestigious NIHR Research Senior Investigator Award 🙌
@maternitytriage, BWC NHS Trust, NIHR ARC West Midlands, Uni of Birmingham, @unibirm_MDS

Delighted and honoured and look forward to supporting NIHR Research NIHR BioResource UKCRF Network @NIHRBhamBRC Institute of Cancer and Genomic Sciences (UoB) BWC NHS Trust and Birmingham Health Partners in rare disease, diabetes and genomics research

1 day to go - WS Global Awareness Day - find out more about this ultra-rare condition & how you can help

wsglobalday.org

#WSGAD #WSUK #thesnowfoundation
Wolfram Syndrome UK
Syndrome de Wolfram
@wolfram_afasw
The Snow Foundation
AEIASW- Sindrome de Wolfram