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