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A message from our Chair during Ehlers-Danlos Awareness Month

 |  Rare disease

May is Ehlers-Danlos Awareness Month. Our chair, Baroness Nicola Blackwood, shares a heartfelt message explaining her journey with EDS.

It took 30 years for Nicola to be diagnosed with Ehlers Danlos Syndrome. In this video, she discusses why it is often an invisible condition that is hard to diagnose and describes how it affects people in their everyday lives.

Genomics England is on a mission to end the diagnostic odyssey for people living with rare conditions. If you know someone who is living EDS, EDS UK has more information and tips on how to better support those living with EDS.

For more information and tips on how to support people with this condition please see

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Linda Todd

Communications & PR

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