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Business Daily

Starting a company to fight rare disease

Business Daily

BBC

News, Business

4.4796 Ratings

🗓️ 7 January 2022

⏱️ 17 minutes

🧾️ Download transcript

Summary

Mapping the human genome led to big advances in diagnosing rare disease. But diagnosis is only the first step in dealing with an illness. So what do you do if your child is found to have a condition that has no treatment? We hear from Michelle Teng, a mother who co-founded a biotech firm called SynaptixBio, that is looking to find the world’s first treatment for a rare neurodegenerative disease. Also in the programme, the Chief Medical Officer at Genomics England, Dr Richard Scott, tells us his hopes for the future of genomics medicine. And Dr Segun Fatumo of the London School of Hygiene and Tropical Medicine, explains why Africa is so important when it comes to genetic research. Presented by Vivienne Nunis and produced by Sarah Treanor. Image: Scientists look at a DNA model. Credit: Getty Images.

Transcript

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0:00.0

You're listening to Business Daily. I'm Vivian Nunes and today we're taking a look at what

0:05.8

many are calling the future of medicine, genomics. It uses our DNA to diagnose rare disease.

0:13.6

But scientists say our genes hold far greater potential when it comes to improving our health.

0:20.1

We hear from one of the UK's leading genomic experts.

0:23.9

I think in 10 years, we'll think of genomic health care much more part of the mainstream. We'll

0:29.0

expect it to be part of how we look after people routinely. But what do you do if your child is

0:35.3

diagnosed with a rare illness that has no treatment?

0:39.5

We hear from a mother who founded a biotech firm to find answers.

0:44.4

I can tell you there are 8,000 rare diseases in this world.

0:48.1

It's virtually impossible for the entire pharmaceutical industry to work on each of them.

0:54.7

The fight against rare disease.

0:56.9

That's Business Daily from the BBC.

1:02.6

So Sophia is 11 now.

1:10.6

Physical disabilities have not actually held her back.

1:14.4

You know, she's simply undaunted by the fact that she doesn't have some of the qualities

1:21.6

and physical attributes that other children have.

1:24.9

Michelle Tang's daughter, Sophia, suffers from a rare form of lucid dystrophy.

1:30.1

It's an illness that affects a relatively small number of people, and so far it doesn't have a

1:35.8

treatment. Sophia was only diagnosed after doctors took a close look at her DNA, a process

1:42.4

known as genetic sequencing. In a moment, we'll hear how her mother

1:46.6

Michelle decided to fill the gap left by the pharmaceutical industry and co-found a company

1:52.4

to find new ways of treating this and other rare disease. But first, let's focus on this idea

...

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