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Ana Tsifouti avatar
Ana Tsifouti

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Hey you, I am running 21.0975 km (half marathon) for The Alkaptonuria Society because we are all different& rare diseases need attention

136 %
£341.82
raised of £250 target
by 12 supporters
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  • Event: Saucony Cambridge Half Marathon 2019, 03 Mar 2019

The Alkaptonuria Society

We provide crucial information and support to patients living with Black Bone Disease

Charity Registration No. 1101052

Story

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. It is soon my birthday and i would like to take this opportunity to ask from friends and family to donate money to The Alkaptonuria (known as black bone disease - i.e. body tissues become brittle and heath deteriorates) Society, i don't need presents/cards, i am lucky to have my health. This is a rare disease and even though there is a drug to help the disease, it has been very recently approved in the UK after many but many years of struggle. The Alkaptonuria society wants to change the lives of more people, including Europe. My friends Nick and Sonya started this marathon of getting the drug approved many years ago when they discovered their sons have this rare disease, you can read more on the story here - both of my friends are awesome :) : https://www.nature.com/articles/d41586-019-00136-7?fbclid=IwAR0Jx_Bl1yju3P-XTO982mskgyuS0-wbkr0srrPi6dD0lfGKu7a1M6ovezU

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