Rare Disease Day

'Rare Disease Day is an annual event which provides the rare disease community across the world the opportunity to increase awareness of rare diseases and highlight rare diseases as a public health priority to government and health departments. It is recognised in countries all around the world and is held on the 29th February, a rare day, when it is a leap year and 28th February in other years.'

 

 

Each year we join rare disease organisations around the world to mark the day and to raise awareness about our members living with hypoparathyroidism. Here's how:

 

 

 

Rare Disease Day 2016

Vincent's Story : We bring you the latest news about baby Vincent who has a rare form of a rare form of hypoparathyroidism - read it here.

Parliamentary Receptions: We are delighted to once again be attending a parliamentary reception to highlight Rare Disease day, this time at the House of Commons in London where we will be represented by committee members Isabel Wray da Silva and Jane Compton and Hypopara UK member Nat Usai Fonnesu. read their account in the Spring 2016 newsletter

 

 

 

 

Rare Disease Day 2015

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


   
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