Pleased to see the LifeArc Gene Therapy Innovation Fund launched today by Anji Miller Ph.D CLP RTTP at #ESGCT2022. lnkd.in/g8mDEugg

Having a great day with the ⁦LifeArc⁩ team today at @CamRareDisease Rarefest 2022.

We are so sad to hear Doddie Weir has died. It's been a huge privilege to work with My Name'5 Doddie Foundation over the past couple of years, co-funding vital research into #motorneurondisease. Together with the MND community we'll continue striving for a world free of #MND. RIP Doddie.

UK Government announces outline plans for £50 million #MotorNeuronDisease research funding🤝 We cautiously welcome the news & are delighted the MND Partnership has received an additional £2m to #Research the causes of MND & search for new treatments💊 ➡️bit.ly/3UKIoaF

An excellent opportunity to showcase the impact and value of the medical #research #charity sector. Delighted to represent LifeArc along with Catriona Crombie today

Congratulations Brian Dickie well deserved!

Today marks Rare Disease Day🦠 LifeArc has awarded six UK #Universities a total of £3M to accelerate #Research that will help people living with #rarediseases🤝 Find out more➡️ bit.ly/3EIu9hx #RareDiseaseDay

Had a fantastic day talking about solutions to our data problems with AMRC BioIndustry Association (BIA) and LifeArc

😊 youtu.be/5Bvx4GmMB_M

Really pleased to release this call for application to establish Translational Rare Disease Centres. lnkd.in/e_eSTdNX

We've enjoyed an insightful day with our partners, Health Data Research UK (HDR UK) & Dementias Platform UK at the joint #MND Data Workshop. Today was about bringing together industry experts to discuss the priorities for #data resources, accelerating the development of #MNDtreatments. lifearc.org/strategy/neuro…

A very interesting day with the key people to build a #ALS #MND data spine for the UK MND Research Institute. Thank you to LifeArc for organising, Health Data Research UK (HDR UK), Dementias Platform UK, Patients United2EndMND and others who took part, and to CreativeConnection for the amazing visual summary #UKMNDRI

First big project by new UK MND Research Institute enabled by £50m @govuk funds showing importance of ‘ring’ fence funding. #united2endmnd. #als #mnd Would not be possible Steve Barclay @GeorgeFreemanMP without ring fencing. We need the same for the rest. lifearc.org/news/2023/new-…

Fantastic day evening with lots of friends with a common interest in furthering research for rare disease patient benefit. Now the hard work begins…, lnkd.in/ebx43TWn

Our Head of Rare Disease Translational Challenge, Catriona Crombie tells The Guardian how medical research charities are playing a vital role in attracting investment towards rare diseases & supporting research that might not otherwise make it to the clinic➡️ healthawareness.co.uk/rare-diseases/…

Great to see the important contribution of charities in funding rare disease research set out so clearly in today's report amrc.org.uk/news/amrc-resp…

Proud to have funded a part of this exciting news🎉➡️ bit.ly/3LCvRV9 The University of Sheffield

🎬Watch "Turning the Tide" a groundbreaking MND documentary by @UCL: bit.ly/3QpBQOw Their gene therapy offers a promising treatment for MND. bit.ly/479GVC2 #TurningtheTide #MND

AMRC charities account for half of public investment in UK rare disease research. But they bring so much more than money to the landscape. Our new report showcases how charities are helping to transform the lives of the rare disease community: shorturl.at/dmzN1.

This blog is the result of a huge amount of work by @izzy_hampson and Liz Perraudin to understand more about charity-supported registries. So pleased to see the update published - and do watch out for more to come from AMRC about registries over the next year.