BIA update – 2 March 2026

Rare Disease Day on Saturday was a moment to reflect on the momentum building , and to check in on the progress of the UK Rare Disease Framework. As ever, BIA’s commitment to improving patient access to innovative medicines remains front and centre, especially as we continue to champion the findings of our latest report and the partnerships helping keep rare disease on the national agenda.

It was great to be invited by Blood Cancer UK to an inspiring breakfast discussion last week on the potential for emerging technologies in clinical trials – and the potential for UK to lead.

Jane Wall
Managing Director, BIA

Genomics’ flagship London office opening also marked a significant milestone for the company’s expansion and a positive signal for the UK’s life sciences ecosystem broadly – specifically UK’s leadership in data and genomics. The Health Data Research Service (HDRS) will be absolutely key to future UK leadership going forward, and in addition to our close, ongoing engagement we are really looking forward to getting into some detail on this with Melanie Ivarsson this week at the APPG and at Women in Biotech.

UK Rare Disease Framework update

Ahead of Rare Disease Day on Saturday 28 February, the Department of Health and Social Care (DHSC) published the fifth England Rare Disease Action Plan, setting out progress made against the four priorities of the UK Rare Diseases Framework and focuses on two underpinning themes: health equity and digital, data and technology. Key developments include expansion of newborn genome sequencing pilots, new National Institute for Health and Care Excellence (NICE) quality standards and the development of a new NHS framework for individualised genetic therapies.

We're pleased to see the plan introduce a new commitment (action 40) which formally recognises rare diseases as a health inequality, embedding equity considerations into future policy development. The framework has been extended to January 2027, and BIA is delighted to be part of the steering group led by Genetic Alliance UK to help shape the next steps and inform future UK rare disease policy once the current framework comes to an end.

On that note, BIA’s efforts on rare disease were on full display when Emily Klein, our Senior Policy and Public Affairs Executive, shared a blog on our parliamentary reception held in the lead-up to Rare Disease Day. She highlights our Charity Partner of the Year, Muscular Dystrophy UK, and our report on unlocking patient access to innovative rare disease medicines. Meanwhile, Rosie Lindup, BIA’s Senior Policy and Public Affairs Manager, was featured in an article highlighting importance of defining the cost of rare diseases in the UK. Through events, partnerships and reports like these, BIA is putting rare disease at the forefront of the conversation.

Celebrating women in biotech

Moving onto the week ahead, I’m looking forward to catching up with many of you at Women in Biotech in Cambridge. We’ll be launching our 2026 update on the Women in biotech leadership report celebrating the launch of She Steers, and hearing from some inspirational sector leaders.. The sell out event will welcome keynotes from Melanie Ivarsson, CEO at HDRS, Susan Galbraith, EVP and Oncology Haematology R&D at AstraZeneca, and Roser Vento-Tormo, Group Leader – Cellular Genetics Programme at Wellcome Sanger Institute. Also speaking are Chiswell Lifetime Achievement Award winner Ruth McKernan and Founder and CEO of J.Thelander Consulting Jody Thelander and others – sure to inspire the next generation of female leaders (and allies) in attendance.

We have had an exceptional response to the launch of She Steers: NEDs in Biotech – the quantity and quality of applications have demonstrated the incredible talent that could be deployed across biotech companies in NEDs positions and we hope the programme will be a catalyst for change so badly needed. 

Community Connections

I am also looking forward to tomorrow’s Community Connects: Regulatory and Access meets BioSolutions, where we will join the Regulatory Affairs and Engineering Biology advisory committees for an engaging session on engineering biology regulation.

The event is a precursor to our inaugural BioSolutions UK conference, the definitive industry event where engineering, biology, and innovation converge to support companies to grow, scale and succeed. Designed for innovators – from start-ups spinning out fresh ideas to large corporates adopting engineering biology – the forum will be a launchpad for disruptive ideas, strategic partnerships and scalable biosolutions that tackle real-world challenges. Some fascinating speakers include Tina Sejersgård Fanø, Executive Vice President at Novonesis, Ross Hendron, CEO of Wild Bioscience, and Arnaud Autret, Investment Director at BOLD, the venture fund of L’Oréal.

Our Community events don’t stop there. We will also be hosting our Cell and Gene Therapy, Manufacturing, TechBio, IP and Finance and tax Communities in exciting, collaborative forums – so do get in touch with Jaime Eaton if you are interested!

New bursary for functional genomics collaboration

Following on from this, we are thrilled to hear the UK Human Functional Genomics Initiative has launched a new Industry Partnership Development Bursary to foster closer collaboration between academic researchers and industry partners across the UK.

The funding call will provide targeted, flexible support to help scientists establish and strengthen partnerships with commercial organisations, accelerating the translation of functional genomics discoveries into real-world applications in healthcare, biotech and beyond.

The bursary is intended to support early-stage engagement activities that are often difficult to fund through traditional research grants, including partnership-building meetings, short visits, networking, workshops and exploratory discussions that could lead to future joint projects.

Great news from members!

A fantastic week of groundbreaking work from our members Precision Life, Brainomix and Centauri Therapeutics. PrecisionLife, a precision medicine company, and Ovation.io announced the results of the first phase of their collaboration to develop drug-response biomarkers to quantitively predict the efficacy, safety and tolerability of glucagon-like peptide-1 receptor agonist (GLP-1) therapies.

Meanwhile, Brainomix, a pioneer of AI-powered imaging tools in stroke and lung fibrosis, today announced a £4.8 million extension to its Series C financing, in addition to the £14 million secured in March 2025, bringing the total in the round to £18.8 million. And Centauri Therapeutics, an immunotherapy company, extended Series A to £30 million with £6 million investment from AMR Action Fund to support progression of lead clinical candidate.

CARB-X tackles global AMR burden

We are pleased to see CARB-X has launched a 2026 funding round to address global burden of anti-microbial resistance (AMR). The funding round includes four distinct product themes: direct-acting therapeutics for infections caused by Gram-negative bacteria, CARB-X Novel Chemistry for AMR Challenge – target-based therapeutics, non-vaccine approaches to prevent neonatal sepsis and diagnostics for neonatal sepsis.

Expressions of interest may be submitted from 8 April 2026 at 10:00 ET – 22 April 2026 at 23:59 ET. Two public webinars will be held on 9 and 10 April to discuss the scope of the funding round, application process and to answer questions. Applicants from around the globe are encouraged to apply, including from areas where the burden of antibiotic resistance is high.

Vaccine sovereignty

Vaccine sovereignty is a strategic imperative for the UK – not only for health resilience but also for economic security and geopolitical stability. BIA was pleased to be present at a recent event on the subject hosted by the Tony Blair Institute for Global Change. COVID-19 exposed some vulnerabilities in global supply chains, regulatory bottlenecks, workforce shortages and over‑reliance on a small number of international suppliers. For us, the message is clear: vaccine manufacturing capability is national infrastructure, and consistent, long‑term policy commitment is required to protect public health, drive economic growth and reinforce the UK’s global leadership in biotech innovation.