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Can artificial intelligence help my daughter – and hundreds of thousands of other children with rare conditions? I truly hope it can. My article in this week’s Mail Health section explains how.
dailymail.co.uk/health/article…
It’s a long read (free to access), but the science is extraordinary and the hope it offers could be life-changing. Please do take the time to read it and share the story – and the work of the charity we have set up to turn science into hope: Rare People – The Research Charity.
When our daughter was diagnosed with a rare genetic condition, we were told there was no treatment – only therapy and support. But over the past year I’ve discovered that medicine is changing beyond anything we could have imagined. With the help of AI and new ways of repurposing existing drugs, there is real hope that treatments for rare conditions could be found far more quickly than we once believed.
That’s why we founded Rare People – The Research Charity: to fund research that could make this hope a reality, but which currently receives little funding because there are no obvious pharmaceutical profits.
On Sunday we held our launch night, attended by more than 500 people. I’m incredibly grateful to everyone who helped make it happen. We heard from scientists from the United States, parents of children with rare conditions, and researchers hoping to lead the first UK trial.
We were also honoured to have the support of Brighton & Hove Albion, with Fabian Hürzeler speaking as a charity ambassador and Tony Bloom as one of our patrons.
So far we have raised £100,000 of the £250,000 needed to fund the first trial we will sponsor. After that, we hope to grow into a major research-funding charity giving hope to thousands of families.
If you would like to find out more, become a founding member, support us as a business partner, or take part in a sponsored event, please email enquiries@rarepeople.org or visit:
rarepeople.org
To donate please go to:
checkout.justgiving.com/944tksa6tk
dailymail.co.uk/health/article…
It’s a long read (free to access), but the science is extraordinary and the hope it offers could be life-changing. Please do take the time to read it and share the story – and the work of the charity we have set up to turn science into hope: Rare People – The Research Charity.
When our daughter was diagnosed with a rare genetic condition, we were told there was no treatment – only therapy and support. But over the past year I’ve discovered that medicine is changing beyond anything we could have imagined. With the help of AI and new ways of repurposing existing drugs, there is real hope that treatments for rare conditions could be found far more quickly than we once believed.
That’s why we founded Rare People – The Research Charity: to fund research that could make this hope a reality, but which currently receives little funding because there are no obvious pharmaceutical profits.
On Sunday we held our launch night, attended by more than 500 people. I’m incredibly grateful to everyone who helped make it happen. We heard from scientists from the United States, parents of children with rare conditions, and researchers hoping to lead the first UK trial.
We were also honoured to have the support of Brighton & Hove Albion, with Fabian Hürzeler speaking as a charity ambassador and Tony Bloom as one of our patrons.
So far we have raised £100,000 of the £250,000 needed to fund the first trial we will sponsor. After that, we hope to grow into a major research-funding charity giving hope to thousands of families.
If you would like to find out more, become a founding member, support us as a business partner, or take part in a sponsored event, please email enquiries@rarepeople.org or visit:
rarepeople.org
To donate please go to:
checkout.justgiving.com/944tksa6tk
