A day in an aHUS life
Article No. 401 11 December 2020 When it comes to those who have aHUS in their lives , everyone has some…
Withdrawal evidence patients need to know
Article No. 400 5 December 2020 Whilst on the topic of safe withdrawal from eculizumab treatment ( see previous articles 398…
“StopEcu” – the French Study reports
Article No. 399 4 December 2020 Just as the previous blog (No. 398) on the same topic was being written and…
Eculizumab withdrawal risk profiling
Article No. 398 4 December 2020 In its previous article "Dip into ASH 2020" Global Action highlighted research results relating to…
Dip into ASH 2020
Article No. 397 28 November 2020 The second major conference at this time of year with research results which matter…
Atypical HUS: Not Like the Others
Patient involvement needs to be integrated across all areas of research and at early stages of planning clinical trials. When patient engagement is in the atypical HUS arena, what considerations make outreach a bit different for advocacy regarding this ultra rare disease?
Help needed to join the aHUS dots
Article No 395 25 November 2020 This was a call to action to the Global aHUS community.( Results to come) It…
Ravulizumab costs less over a life time
Article No 394 23 November 2020 In an article on 16 October 2020 (No 388) aHUS Global Action derived a cost…
Atypical HUS & #Nephrology #SoMe
Harnessing the power of Nephrology Social Media - the aHUS Alliance looks back at KidneyWeek 2020 and its ability to inform & engage patient groups as well as medical professionals. How might Patient Experiences become better integrated to improve outreach and understanding for all stakeholders and initiatives?
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