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.

Read now: https://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: https://www.readableresearch.com/lifearc/dataresearch/

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.

We're sharing 7 lessons from our childhood cancer workshops.

Read now: https://t.ly/oMPZi

Why choose a career in cystic fibrosis research?

4 researchers from across the CF Lung Health Network share what inspires them in their work every day.

#CysticFibrosis #ResearchCareer

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

See you at #GAMRIC2027!

Discussions about treatments need diverse perspectives. Bringing together clinicians, researchers, and people with lived experience can uncover challenges and inform better decisions.

We're sharing 7 lessons from our childhood cancer workshops. Read them all: https://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.

https://www.lifearc.org/2026/celebrating-2-years-of-the-network-driving-innovation-for-cf/

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).

Learn more: https://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.

Learn more and apply: https://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: https://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: https://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.

https://bit.ly/4hs8XPz

Bringing together all aspects of the #AMR research lifecycle is a key benefit of #GAMRIC2026. In the current session, we hear from the different perspectives throughout the lifecycle including IPC, clinical, innovators and trial-design.
CARB-X LifeArc Global Antibiotic R&D Partnership (GARDP)

Day 2 of #GAMRIC2026 starts off with discussions on addressing the gaps and unmet needs in #AMR particularly how to accelerate impact in paediatric AMR and in LMICs.

Talks by Marcela Ramirez, Nina Putri, Tanu Singhal
CARB-X LifeArc Global Antibiotic R&D Partnership (GARDP)

Day 1 wrap-up of #GAMRIC2026 is now live on our LinkedIn (https://lnkd.in/p/e89DW9N3)
CARB-X LifeArc Global Antibiotic R&D Partnership (GARDP)

To improve treatment approaches, we need to first understand the unmet need. Engaging the community early can help define the challenge and uncover the barriers holding progress back.

We're sharing 7 lessons from our childhood cancer workshops. Read them all: https://t.ly/oMPZi

Why choose a career in cystic fibrosis research?

4 researchers from across the CF Lung Health Network share what motivates them and the difference they hope to make for people living with CF.

#CysticFibrosis #ResearchCareer

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.

"The next three years will be pivotal."

In @healthcaretoday.bsky.social's latest interview, our CEO Sam Barrell discusses the changes needed to accelerate rare disease research in the UK and deliver greater patient impact.

healthcaretoday.com/article/life...