LifeArc

Open collaboration depends on trust. Creating space to share knowledge while respecting sensitive information helps enable open discussion without compromising confidentiality. We're sharing 7 lessons from our childhood cancer workshops. Read them all: t.ly/oMPZi

Raremap has been growing – we now have 160 organisations in the community! If you work in rare disease, request to be added now: raremap.co.uk/join/

The Future for Rare report, published today by @GeneticAll_UK, calls for a renewed focus on data, diagnosis, coordinated care, and the appointment of a rare disease lead in each UK country accountable for turning ambition into action. Read it now 👉geneticalliance.org.uk/futur…

DSRCT is an extremely rare and aggressive cancer affecting children and young adults. We brought together researchers, clinicians and patient advocates to identify promising opportunities for future treatments. 📄 Read the findings: nature.com/articles/s41416-0…

Knowing what not to pursue can be as valuable as knowing what to prioritise. Our workshops showed the value of making clear choices on what should and shouldn't move forward, and why. Read 7 key lessons we've shared from our childhood cancer workshops: t.ly/oMPZi

Meaningful patient involvement in rare disease research doesn't happen by chance. It requires funding, infrastructure, recognition and commitment. Our new co-authored peer-reviewed commentary explored how PPIE can be embedded across the research pathway: t.ly/vggqd

How do patients feel about their information being used to advance scientific research? It’s an important question, and one which you can explore further in this easy-to-read summary from our Translational Science Summit, by Readable Research: readableresearch.com/lifearc…

For any workshop, the most important work often happens before the meeting starts. Preparation creates a common foundation of understanding and helps drive engagement in the meeting itself. Read the 7 lessons learned from our childhood cancer workshops: t.ly/oMPZi

Last week, experts in drug-resistant infections gathered in Lisbon for #GAMRIC2026. Our takeaways: • Innovation must be shaped by real-world needs • Access must be considered from the start • We need a robust ecosystem with sustained investment and strong collaborations

Discussions about treatments need diverse perspectives. Bringing together clinicians, researchers, and people with lived experience can uncover challenges and inform better decisions. We've shared 7 lessons we learned from our childhood cancer workshops: t.ly/oMPZi

The CF Lung Health Network is 2! Read on find out more about just how far the network has come in making real progress against lung infections in cystic fibrosis. lifearc.org/2026/celebrating…

Could an existing antibiotic help treat a rare liver disease? We're supporting a Phase 2b/3 trial to investigate whether oral vancomycin could help treat people living with primary sclerosing cholangitis (PSC) and inflammatory bowel disease (IBD): t.ly/RgwT_

We're proud to partner with the Academy of Medical Sciences to launch a new fellowship programme focused on rare diseases. Supporting clinician scientists with the skills, networks and experience to translate research into patient impact. Apply here: t.ly/12yhw

What could the next generation of genetic medicines mean for people with rare diseases? Experts at our Translational Science Summit earlier this year explored the opportunities and challenges shaping the field. Catch up with the accessible summaries: bit.ly/3UY0Fr4

A good discussion is one thing, but turning conversation into action is another. Our workshops showed the value of a clear decision-making framework to propel actionable outputs. We're sharing 7 lessons from our childhood cancer workshops. Read them all: t.ly/oMPZi

What makes #CysticFibrosis research such a rewarding career? In this article, researchers from across the CF Lung Health Network reflect on the experiences that are shaping their work and helping drive progress for the future. bit.ly/4hs8XPz

To improve treatment approaches, we must first understand the unmet need. Engaging the community early can help define the challenge and uncover the barriers holding progress back. We've shared 7 lessons from our childhood cancer workshops. Read them all t.ly/oMPZi

The Future For Rare Summit brought together over 100 people from across the UK, including those affected by rare conditions, support organisations, clinicians, researchers and policymakers, to agree the priorities for a new UK-wide rare disease policy.

What should the future look like for people living with rare conditions? With Genetic Alliance UK and Newcastle University, we've brought together the rare disease community to help shape the next generation of UK rare disease policy at the #FutureForRare summit.