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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