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!