UK sufferers - Consulting with the Government

[Guest guest]

Hello,

I just needed to draw any UK sufferers' attention to the fact

that, if you have a 'Rare Disorder', there is currently a new

government consultation with the public going on, in which

all people with rare disorders (or lack of diagnosis) can

bring their ideas to the notice of someone in the Dept Health

- it's just that it is little publicised (I only found out about it

yesterday!). There is an official form to complete and

send off, to be received by

25th MAY 2012

Go to the Department of Health Government website:

_www.dh.gov.uk_ (http://www.dh.gov.uk)

Then put Rare Diseases into the search box. Then select

_UK Plan for rare diseases consultation launched_

(http://www.dh.gov.uk/health/2012/02/consultation-rare-diseases/)

The form (to complete) can be found at section 12 (page 47)

of this document. Please will you publicise this to anyone

else you think could help ASAP - it could help 100,000 +

to eventually get the treatment they are entitled to!

Regards

Barbara

(UK)