Rare diseases: from lived experience to lasting treatments | Sponsored

<p>To mark Rare Disease Day, this special Spotlight episode explores why&nbsp;&nbsp;rare diseases - affecting an estimated one in 17 people in the UK – still face years of diagnostic delays and limited treatment options.</p><br /><p>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.&nbsp;</p><p>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.</p><br /><p>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.</p><br /><p>This New Statesman podcast episode has been fully funded by LifeArc.</p><br /><p><a href="https://www.lifearc.org/rd-report/" rel="noopener noreferrer" target="_blank"><u>Find out more about LifeArc’s Taskforce Report and recommendations.</u></a></p><p><strong>LISTEN AD-FREE:</strong></p><p>📱<a href="https://www.newstatesman.com/politics/2022/06/newapp" rel="noopener noreferrer" target="_blank">Download the New Statesman app</a></p><br /><p><strong>MORE FROM THE NEW STATESMAN:</strong></p><p>❓ <a href="https://www.newstatesman.com/podcasts/2022/10/you-ask-us" rel="noopener noreferrer" target="_blank">Ask a question</a> – we answer them every Friday</p><p>⏰ <a href="https://morningcall.substack.com/subscribe" rel="noopener noreferrer" target="_blank">Get our daily politics newsletter</a> every morning</p><p>✍️ <a href="http://saturdayread.substack.com/subscribe" rel="noopener noreferrer" target="_blank">Enjoy the best of our writing</a> via email every Saturday</p><hr /><p style="color: grey; font-size: 0.75em;"> Hosted on Acast. See <a href="https://acast.com/privacy" rel="noopener noreferrer" style="color: grey;" target="_blank">acast.com/privacy</a> for more information.</p>