How can we ensure tests and treatments for brain health conditions are truly accessible for all?
A great discussion between our CEO, Sam Barrell and Niranjan Bose of Gates Ventures at The Brain House, Davos.
On World Book Day, we're sharing 'See Me' from the LifeArc-
@kidneyresearchuk.org Centre for Rare Kidney Diseases. Told in rhyme, it follows a child living with a rare kidney condition, raising awareness of invisible illness and the power of research.
📚 Order now: t.ly/b4ksx
Rare disease innovation needs mission‑driven science. Our CEO explored this on the latest episode of the @newstatesman1913.bsky.social podcast, released for #RareDiseaseDay.
Listen on Spotify: t.ly/RteOX
Listen on Apple Podcasts: t.ly/O_5DG
"We need to do more for people living with a rare disease – they don't have time to wait."
Read the @newstatesman1913.bsky.social's rare disease report, introduced by our CEO Sam Barrell: t.ly/EyekY
Listen on Spotify: open.spotify.com/episode/2oBu...
Listen on Apple Podcasts: podcasts.apple.com/gb/podcast/r...
Families are reshaping the rare disease landscape – not just as patients, but as advocates and drivers of change too.
Our CEO Sam Barrell and parent‑advocate Terry Pirovolakis spoke with the @newstatesman1913.bsky.social in a podcast to mark Rare Disease Day.
Nicola lived through the pain of undiagnosed Fanconi Syndrome as a child. Years later, her daughter Emilie began showing the same symptoms.
A rare disease shouldn't define generations. Research can change that. #RareDiseaseDay
To mark #RareDiseaseDay, we worked with the @newstatesman1913.bsky.social and key industry voices to create a rare disease report looking at where the opportunities lie to create better outcomes for patients: https://t.ly/EyekY
Today is #RareDiseaseDay. Yesterday’s activation at King’s Cross encouraged the public to stand in support of an often‑overlooked community. We shared patient stories, sparked meaningful conversations, and are proud that over 1,700 people interacted with us to show their support.
Collectively, there are around 7,000 rare diseases, yet the voices of the people and families living with these conditions are rarely heard.
Today, we're sharing some of these stories and reminding people of the millions of lives impacted by rare disease.
#RareDiseaseDay
To mark #RareDiseaseDay, this week's @newstatesman1913.bsky.social magazine includes an important report on rare diseases, featuring key industry voices and our CEO's perspective.
Read the report now: https://t.ly/EyekY
It's brilliant to see the public interacting with our stand by taking photos with our zebra mascots and stamping a pink hoofprint on the wall to represent the 1 in 17 people living with a rare disease.
#RareDiseaseDay
Together, rare diseases impact 1 in 17 people. Rare is not rare.
Ahead of #RareDiseaseDay tomorrow, we've taken to King's Cross Station to bring this message to life and shine a light on an often‑overlooked community.
Tomorrow we'll be at King's Cross, raising awareness of the 300 million people worldwide living with a rare disease.
Stop by to show your support, explore our interactive installation, and pick up LifeArc playing cards and stickers.
🦓 Find us between the two main departure boards.
Ollie became the first child in the world to receive a gene therapy for Hunter syndrome and, a year on, he's thriving. This #RareDiseaseDay, we're spotlighting stories like Ollie's to raise awareness of the urgent need faced by people living with rare diseases.
Samantha is the first person to join a trial testing whether a repurposed drug can slow neuroferritinopathy, a condition that has affected 4 generations of her family. A real source of hope for future generations. #RareDiseaseDay
With no treatment available when Michael was diagnosed with SPG50, his dad Terry built a team, launched Elpida and helped create a gene therapy now improving Michael's life. A powerful reminder this #RareDiseaseDay of the support needed for rare conditions.
Children's health data is very different from adults', and it's currently scattered around the hospitals. KidsRare aims to change this by securely connecting anonymised paediatric data, enabling researchers to see the full picture.
Read more: t.ly/BmOdR
What will it take to prepare societies for the rising burden of brain‑health conditions?
In our recent blog, we examined how we can shift from responding to late-stage crises to building systems that prioritise early detection, equity, and long-term prevention.
🔗 Read now: https://t.ly/p1e3F
In case you missed it, D-SCAPE, a low-cost wearable device using advanced sensors and AI to detect early signs of severe dengue, was featured in The Telegraph.
Our investment supports prototype development, clinical testing, and future commercialisation.
Read now: https://t.ly/MXOre
Our newly launched Health Data Strategy sets out four goals to unlock the potential of high-quality data to transform the lives of people living with rare disease.
Read more here: https://t.ly/59v-G
If you could change one thing about society's approach to brain health, what would it be?
Destigmatising dementia and other brain health conditions is essential if we want people to embrace routine checks, seek diagnosis and join clinical trials that could change their future.
It was a single genomic test powered by connected data that led to Lucia's diagnosis of Hao Fountain Syndrome. The KidsRare project will give more families answers, faster, by connecting paediatric rare disease data for the first time.
Find out more: https://t.ly/yp3uI
Our newly launched Health Data Strategy sets out key focus areas where data science could help speed up access to clinical trials and innovative new treatments.
Read the full strategy here: https://t.ly/59v-G
Applications are open for the LifeArc Knowledge Transfer Innovation Fellowship!
This programme helps scientists build a career in technology transfer with training, mentoring, global networks and the flexibility to continue in your current role.
Apply now: https://t.ly/AlpAz
A huge congratulations to Brian Bigger for being recognised in the TIME100 Health List. Brian developed a new gene therapy for Hunter syndrome that's already transforming lives following a clinical trial funded by LifeArc.
t.ly/qZDOT
We're collaborating with GOSH to set up KidsRare, a new UK-wide health data initiative aiming to connect paediatric rare disease data for the first time. A big step forward to children living with rare diseases and their families.
As featured today in the @telegraph.co.uk, we're supporting the development of D-SCAPE – a low-cost, wearable device that detects early signs of dengue. This could make a huge difference to the more than 400 million people a year affected by this mosquito-transmitted disease.
t.ly/pyHLv
Science is stronger with women at the table too. At LifeArc, we will always champion equitable access to scientific careers, on International Day of Women and Girls in Science and beyond.
