Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed countries. It occurs when the mechanism removing excess cystine (an amino acid) breaks down.

The Cystinosis Foundation UK aims to:

• Provide support to all diagnosed with cystinosis, their families and relatives.
• Provide relevant, accessable and up to date information about the disorder, as well as advice on specialist sources of help for new symptoms developing in patients.
• Publish containing relevant information for patients and supporters will be produced regularly.
• Organise or participate in conferences relevant to cystinosis.
• Support research into the treatment of cystinosis.

 

In January 2022 M4RD featured Cystinosis on #MysteryMonday, covering the basics to help medics and HCPs be more aware of this condition.  You can view the highlights here.

• Listing ID: 9339
• Facebook: https://www.facebook.com/CystinosisFoundationUK
• Twitter: https://twitter.com/cystinosisuk

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Contact details

UK https://www.cystinosis.org.uk/