Meet Vincent. At 6 weeks old he is our youngest , newest member and has already led a very full life. It turns out that little Vincent has a very rare disease indeed; a rare form of a rare disease, in fact. He has a genetic form of hypoparathyroidism caused by a calcium receptor mutation of which there are over 300 types. Vincent’s type is the second only reported case in the world. Read Vincent’s Story in full.
Rare diseases are collectively not rare. There are between 6,000 and 8,000 known rare diseases and over 3.5 million people in the UK are affected by them at some point in their lives. There is no data on the numbers of people living with hypoparathyroidism in the UK. We have over 1500 members…
Hypopara UK is a member of Rare Disease UK. They are the national alliance for people with rare diseases and all who support them. They believe that ‘everyone living with a rare disease should be able to receive high quality services, treatment and support.’ It was established by the Genetic Alliance UK to develop and campaign for a UK Strategy for Rare Diseases and to promote Rare Disease Day in the UK. To find out more, please visithttp://www.rarediseaseday.org