From the moment it was formed, aHUSUK supported the setting up an aHUS Expert Centre for aHUS. Indeed one has existed, albeit as a temporary arrangement within NHS England since the time that AGNSS recommended it should be created. AGNSS was not just about evaluating eculizumab.
In May this year NHS England finally chose the “centre” in Newcastle upon Tyne as its contracted and funded partner for aHUS excellence, and more.
The additional remit is why the Centre is not to have aHUS in its title, but its role will be performed instead by the National Renal Complement Therapy Centre which be located at the Royal Victoria Infirmary in Newcastle upon Tyne.
The NRCTC will have a role in the treatment of Membranoproliferative glomerulonephritis and Dense Deposit Disease or MPGN/DDD, and also a secondary form of aHUS caused by Stem Cell Bone Marrow transplants, where complement is implicated and destroys renal function as with aHUS.
Also the Centre will be funded and resourced to provide more non clinical patient support, which has relieved aHUSUK and now Answers for aHUS of some of its purposes e.g holding conferences patient days and even a replacement patient card eventually. More information about these and other support responsibilities will emerge with time as the Centre implements its own patient communication channels.
For aHUS patients the Centre is important, not just because they can get the best treatment now, but also that it retains respect, and indeed becomes an even more respected, by NHS ( and not just NHS England) and NICE as and when further aHUS treatment developments, be they new versions of eculizumab or alternative complement inhibitors, come along.
The #RareDisease6 below i.e. the overarching issues faced by all rare diseases and which are embedded with the UK’s Rare Disease Strategy* :
have ,over the past five years ,been acted on and resolved for aHUS to some extent. aHUS patients are now in a more favourable position than they were, and most of those affected by many rare diseases. Nevertheless this is not the time for complacency and there is still more to be done.
At the heart of that are the aHUS patients themselves in the centre of the Centre.
* click here for more information