An article about aHUS was published yesterday.
It appeared in the International Journal of Nephrology and Renovascular Disease.
Its title is
“Optimal management of atypical hemolytic uremic disease: challenges and solutions”
It is 22 pages long, including the references list and covers all the key issues about the management of aHUS today.
This article reviews , summarises and analyses in a way which educates the reader and makes them think about the challenges from clinical, health economics and patient perspectives. In the latter respect it addresses most, if not all of the research topics that the aHUS patients have said matter to them in their aHUS Global Research Agenda.
It is very well worth while reading and the full article can viewed for free by following the link HERE.
Visitors to this website who may not have time to read it all should try to read the article’s “challenges of eculizumab” section which begins on page 188 , and recommences on page 195/196.
The inclusion of a “patients perspective” in the way this article has done sets it apart from most publications about aHUS.
Credit for that goes to the lead author, Dr Rupesh Raina of Akron Children’s Hospital Ohio and who is an eminent educator on behalf of the International Society of Nephrology. Since coming across the alliance’s website Dr Raina has been in dialogue with the alliance for more than a year and is listed within the aHUS Alliance global network of aHUS Clinicians and Investigators. As the alliance’s mission includes working with international aHUS research networks we were delighted that Dr Raina and the co-authors chose to do so. The aHUS Alliance was invited to contribute its ‘patient perspective’ to this article noting disease management and aHUS challenges, with Linda Burke invited to contribute as a co-author for this publication.
Who is better placed to demonstrate the ways and means by which Global patient advocacy is challenging and educating those who make decisions about aHUS patients where ever they live to make the best decisions for patients.
Linda will have more to say about this next week after attending a meeting in Cleveland, at which she will be talking about the alliance’s global patient advocacy.
The alliance as a whole is indebted to Linda for her contribution to what is really a seminal paper ,not only about aHUS patient management in 2019 , but in influencing its future.
