Rare diseases: from lived experience to lasting treatments | Sponsored

Rare diseases: from lived experience to lasting treatments | Sponsored

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.

LISTEN AD-FREE:

📱Download the New Statesman app


MORE FROM THE NEW STATESMAN:

Ask a question – we answer them every Friday

Get our daily politics newsletter every morning

✍️ Enjoy the best of our writing via email every Saturday

Hosted on Acast. See acast.com/privacy for more information.

Denne episoden er hentet fra en åpen RSS-feed og er ikke publisert av Podme. Den kan derfor inneholde annonser.

Episoder(1467)

Farage’s fan club doesn’t care about scandal

Farage’s fan club doesn’t care about scandal

The fallout from Reform’s latest scandal, John Healey’s first major speech as Chancellor and Ukraine’s plan to tax porn stars.Anoosh Chakelian and Will Dunn discuss the stories of the week.Read: https...

12 Sep 28min

Ed Miliband resets relations with Israel

Ed Miliband resets relations with Israel

Foreign Secretary Ed Miliband has unveiled the biggest reset in UK relations with Israel for decades, and, in typical fashion, is putting his stamp on his new role.Meanwhile, the scandal surrounding R...

10 Sep 1h 4min

Andy Burnham can’t explain the economy

Andy Burnham can’t explain the economy

Labour’s missing money metaphor, the millionaires still getting benefits and Dyson’s £420 toothbrush. Anoosh Chakelian is joined by Will Dunn to round up the stories of the week.READ: https://www.news...

5 Sep 36min

Burnham vs Badenoch: PMQs, round one

Burnham vs Badenoch: PMQs, round one

This week was Andy Burnham’s first in the Commons as Prime Minister, facing his inaugural head to head with Kemi Badenoch at PMQs.As for the Tories, they have undergone a major reshuffle.Anoosh Chakel...

3 Sep 1h 2min

How can the UK protect its historic buildings from climate change?

How can the UK protect its historic buildings from climate change?

As the UK faces hotter summers, wetter winters and more unpredictable weather, its historic buildings will need to adapt. But how can Britain make them more resilient without compromising the heritage...

2 Sep 22min

The investigation into “Farage Fest”

The investigation into “Farage Fest”

The investigation into Nigel’s “Farage Fest” election party, Andy Burnham’s Ukrainian jam session and Pope Leo XIV making it onto Vanity Fair’s best dressed list.Anoosh Chakelian and Will Dunn round u...

29 Aug 28min

Zack Polanski's honeymoon is over

Zack Polanski's honeymoon is over

It’s nearly a year since Zack Polanski took the reins of the Green party. In many ways the party has never been so successful – with five MPs, leading six local authorities and a leader who cuts throu...

27 Aug 36min

How will Burnham navigate the North Sea?

How will Burnham navigate the North Sea?

One of the first big decisions of Andy Burnham’s premiership is looming: whether to drill for North Sea oil and gas. Labour made a manifesto promise not to grant new licences for oil and gas explorati...

24 Aug 30min

Populært innen Politikk og nyheter

giver-og-gjengen-vg
aftenpodden
forklart
aftenpodden-usa
bt-dokumentar-2
stopp-verden
popradet
fotballpodden-2
nokon-ma-ga
det-store-bildet
dine-penger-pengeradet
rss-espen-lee-usensurert
hanna-de-heldige
rss-gukild-johaug
unitedno
rss-ness
aftenbla-bla
e24-podden
frokostshowet-pa-p5
rss-penger-polser-og-politikk