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We are the London Hutts: David, Thirusha, Ettienne & Alexander. Together we are running and cycling the equivalent of 4 marathons  (168 km) during International Porphyria Awareness Week. Our challenge will start on 19th April and end 8 days later on 26th April 2020.

We are doing this to raise awareness of porphyria and to support the work of the British Porphyria Association http://wwwporphyria.org.uk/  - a fantastic organisation supporting people living with porphyria.

Porphyrias are a group of rare genetic diseases which can be extremely debilitating. Because it is not a well known disease it can take a very long time for people to be diagnosed; often they have many hospital admissions, sometimes even unnecessary operations, before they are diagnosed.

To find out more visit http://www.porphyria.org.uk 

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