Rare Disease UK (RDUK) has been in touch with a request that individuals write to their MPs to raise awareness of rare diseases.

Request from Stephen at RDUK:

There has been a delay in RDUK getting the information out  The reason for the delay was getting an Early Day Motion for MPs to sign up to and it has taken a (very) long time to get the EDM up.  An Early Day Motion is basically a statement which MPs can sign up to if they support it. The more MPs we can get to sign up to it, the more we can demonstrate to the Government the political support for a strategy for rare diseases and for the aims of Rare Disease Day.

Dr Evan Harris MP kindly tabled the EDM for us, it reads:
That this House welcomes the third International Rare Disease Day on 28 February 2010; notes that there are over 6,000 rare diseases, affecting approximately 3.5 million people in the UK; supports the focus of this year's Rare Disease Day on the importance of research into rare diseases for the millions of patients without a cure; believes that rare diseases should be seen as a public health priority; and joins Rare Disease UK in calling on the Government to act on its commitment to a strategy for rare diseases as demonstrated by the adoption of the European Council Recommendation on action for rare diseases in June 2009.
(EDM 978 – International Rare Disease Day)

We would like as many MPs as possible to support the EDM so please could you contact your MP and ask them to sign up to it. Below is a template letter/email for you to send. As Rare Disease Day happened recently, it may be speedier to email your MP.

Download a template letter – Word doc.

If you are not sure who your MP is, or if you would like to look up their contact details to email them instead, you can find this online at: http://findyourmp.parliament.uk/

A handy website to email your MP is http://www.writetothem.com/

Thanks once again for your cooperation.
Best wishes,
Stephen
RDUK Secretariat
This e-mail address is being protected from spambots. You need JavaScript enabled to view it 020 7704 3141