Advocacy lessons learned so far
By Christmas 2013 it was over two years since aHUSUK, and my part in it as a reluctant advocate, had begun.…
Contributors All: National vs Global aHUS Research Efforts
The aHUS Alliance shares research within specific nations, and notes the value of a global focus on the collaborative nature of atypical HUS research and of aHUS advocacy. Creating improvements in disease management, determining clinical guidelines, and deepening of the aHUS knowledge base is important within each nation - in turn this benefits global collaboration as it further builds upon such efforts.
OMS721: Omeros Research Collaboration with University of Cambridge
Pharma News: an Atypical HUS update from the aHUS Alliance. In its 11 December 2018 press release, the Omeros Corporation announced a new collaboration with a UK university to create the Omeros Center at Cambridge for Complement and Inflammation Research (OC3IR). Focus of the OC3IR will be research into OMS721 and OMS906, but how will it engage other aHUS stakeholders interested in OMS721 clinical trials and atypical HUS advancements in research?
11th December 2013 – Part 3
There was no rush! Strange how the media portrayal of transplant stories is of a quick action drama , with blue…
11th December 2013 Part 2
It may seem odd that on the very same day that NICE was making its decision on whether eculizumab should be…
11th December 2013 Part 1
It was a cold, crisp and frosty morning in Manchester, England on 11th of December 2013 . Above the sky was…
aHUS Trials Watch 6
The aHUS alliance has found out that there has been a trial of the drug Coversin for the treatment of aHUS…
And keep those plates spinning while you are at it
The reluctant advocate’s journey continues, ( click here for the story so far). Our NICE evidence was submitted on 9 September…
Research that matters to aHUS patients at ASH
The American Society of Haematology hosts its annual conference in San Diego from 30th November to 4th December 2018 . A…
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