Rare diseases: from lived experience to lasting treatments | Sponsored

Rare diseases: from lived experience to lasting treatments | Sponsored

Author: The New Statesman March 1, 2026 Duration: 21:16

To mark Rare Disease Day, this special Spotlight episode explores why  rare diseases - affecting an estimated one in 17 people in the UK – still face years of diagnostic delays and limited treatment options.


Host Sarah Dawood speaks to CEO of LifeArc Dr Sam Barrell and Terry Pirovalakis, whose son Michael has been diagnosed with the rare neurological disorder SPG50. 

Their discussion looks at the reality of the “diagnostic odyssey”; gaps in data, investment and regulatory pathways; and the financial and structural challenges that limit progress in rare conditions.


They also explore the growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.


This New Statesman podcast episode has been fully funded by LifeArc.


Find out more about LifeArc’s Taskforce Report and recommendations.

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Each weekday, Daily Politics from the New Statesman cuts through the noise of the 24-hour news cycle to offer something more substantial. Hosted by Anoosh Chakelian and Oli Dugmore, along with the wider New Statesman team, this isn't just a recap of headlines. Instead, it provides sharp reporting and clear analysis from the heart of Westminster, paired with thoughtful conversations that look beyond the capital to the cultural and societal forces shaping the political landscape. You'll hear from the magazine's own journalists and a range of expert guests who help explain not just what is happening, but why it matters. The perspective is inherently progressive, rooted in the New Statesman's long tradition as a leading voice in British political commentary. Tuning into this podcast means getting a deeper, more considered understanding of the day's events, delivered with clarity and insight. It’s designed for anyone who feels that politics is too important to be left to soundbites, offering a reliable and engaging daily digest that makes complex issues accessible without oversimplifying them.
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