Rare Diseases Day Invitation

Genetic Alliance in partnership with Alexion Pharma have  now successfully raised 2000 hands to feature on a sculpture being made for Rare Disease Day.  They are now extending an invitation to BUS  members (amongst others with a rare disease) to come along to the launch which takes place at London’s Science Museum on 28th February from 12.00 – 14.00.

“The Genetic Alliance and Alexion Pharma would like to invite you to an event at The Science Museum on Rare Disease Day 2014 from noon to 2pm to unveil a statue depicting the support of the general public and well known people such as Jenny Agutter for people with rare diseases. With the launch of the Rare Diseases Strategy last week, and the involvement of high profile people such as Jenny and many others, the issue is one which is gaining much attention at the moment.

For every pledge made on the campaign website, a hand – the symbol of Rare Disease Day – will be created and an art installation has been commissioned to transform all the hands into a visual illustration of the commitment to raise awareness of rare diseases. The target of 2,000 pledges this year has been reached.  The UK-based artist who is creating this work, Lisa Price, was chosen earlier this year in a competition run by the campaign organisers, The Genetic Alliance.

The sculpture will go on tour around the country in hospitals and schools to continue to raise awareness of this important cause.

Journalists and celebrities who have supported our campaign will be attending the event.”

Please see attached for a copy of your invitation and if you would like to attend quickly email: JohnsonS@alxn.com.  Numbers are limited, so contact the organisers today, if you would like to go along.  Birdshot Uveitis Society will feature in the press pack which will be presented to the journalists attending.

As part of the raising awareness campaign, the press have been invited along, and BUS will be featured in the press pack that they handing out.  So please do look out for mentions in the press.

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