Rare Disease Day News
'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 2017
This year we were excited to be involved in the following events for Rare Disease Day:
The stories of 3 of our members with different kinds of hypopara were featured in the Mediaplanet-UK Rare Diseases Campaign in The Guardian. Isabel Wray da Silva’s story is about her experience living with post surgical hypoparathyroidism, while Vincent Thorpe Tavares’s mum Christabel talks about him being born with a very rare genetic form. You can read both stories in full here
The charity Climb feature another of our members, Harriet Macleod, talking about her pseudohypoparathyroidism here
If you would like to help Vincent buy a waterproof pump please read more and donate here
Two of our members, Stephanie Agnew and Anne Cusack represented us in Scotland this year at the Rare Disease Day reception at Holyrood on the 1st March. You’ll be able to see photos in our newsletter.
Bears4Rare was an initiative from Shire which took place no March 15th and aimed to bring public attention to the difficulty rare disease patients face accessing treatments.
An installation of 1,000 teddy bears on Waterloo Station was very effective! Each bear was tagged with a real patient story and together they represented the number of people living with a rare disease passing through the station every hour. It was also designed to get people waiting for a train to think about the wait that a person with a rare disease has for a diagnosis or access to treatment
Isabel Wray, Aisling Duffy and Claire Butchers from Hypopara UK were there too. Well done Verity and team from Shire!
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