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The Alkaptonuria Society

Jess Barnes whose son has AKU makes the Radio 4 Appeal on behalf of The Alkaptonuria Society.

Jess Barnes whose son has AKU makes the Radio 4 Appeal on behalf of The Alkaptonuria Society.

To Give:
- Freephone 0800 404 8144
- Freepost BBC Radio 4 Appeal. (That’s the whole address. Please do not write anything else on the front of the envelope). Mark the back of the envelope ‘The Alkaptonuria Society’.
- Cheques should be made payable to ‘The Alkaptonuria Society’.
- You can donate online at bbc.co.uk/appeal/radio4

Registered Charity Number: 1101052

Available now

3 minutes

Last on

Thu 6 May 2021 15:27

The Alkaptonuria Society

Alkaptonuria (AKU), also known as ‘black bone disease’, is a rare genetic disorder that causes a build-up of toxic acid in the body that damages patients’ bones and cartilage, turning them black and brittle. The nature of the disease often leads to a life of joint replacements, disability, extreme pain and loss of independence. 
The AKU Society works to improve the lives of patients and those who support them, whilst researching for a cure. This ultra-rare disease affects between one in 250,000 to 500,000 people worldwide.

Patient Support

Patient Support
We provide the latest, up to date information about AKU, run annual patient workshops and offer individual home visits. We also give ongoing support through the National AKU Centre (NAC), which was provides free assessments and treatment to patients over the age of 16.

Jess and Daniel

Jess and Daniel
We help families like Jess and her ten year-old son Daniel (pictured) who was has AKU. In our Radio 4 Appeal Jess will be explaining our upcoming children’s study and the urgency of knowing when AKU starts in children so that we can give young people ground-breaking treatment.

Medical Research

Medical Research
Our goal is to form scientific partnerships to understand and treat AKU. Our medical research over the last decade has led to a drug nitisinone, which halts the symptoms of AKU. We now want to cure black bone disease entirely through a potential gene therapy.

Charity website

Broadcasts

  • Sun 2 May 2021 07:54
  • Sun 2 May 2021 21:25
  • Thu 6 May 2021 15:27

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