Today’s Daily Telegraph includes an open letter in support of the Medical Innovation Bill (aka the Saatchi Bill). This is Bill proposes a change in the law so that it is easier for doctors to prescribe off-label and innovation treatments to patients. For people with LFS this is especially relevant, and there are lots of cases where we know patients are denied such treatments, even when there is nothing else on offer.
The Trust took a central role in organising this letter, which can be accessed here:
http://www.telegraph.co.uk/comment/letters/11382880/Letters-NHS-reform-must-be-top-of-each-partys-agenda-ahead-of-the-May-election.html