Early day motion · EDM 601 · 27 Jan 2009
PAROXYSMAL NOCTURNAL HAEMOGLOBINURIA
Tabled by David Taylor (Labour (Co-op))
37 signatures
The motion
That this House welcomes the Government's decision to nationally commission services for the treatment of the ultra-orphan disease Paroxysmal Nocturnal Haemoglobinuria (PNH); acknowledges that without treatment with eculizumab patients with this chronic life threatening disease are left only with the options of recurrent blood transfusions and, in a small number, bone marrow transplant; and congratulates the PNH Alliance of clinicians, industry and patients who are working to ensure PNH services continue to improve patient outcomes.
Source: the official Early Day Motions database.