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…
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?
Advancements in mRNA – an approach to COVID-19 Vaccines
Pfizer and BioNTech press release 9 Nov 2020 announced positive announcement for their COVID-19 vaccine candidate. In the rapidly changing pandemic landscape, the aHUS Alliance provides compiled info & resources for background on mRNA and its potential approach to prevent disease.
IPNA WebMaster for Nov 7th: Focus on HUS
Join in this 7 November 2020 IPNA endorsed webinar on HUS, number 17 in the IPNA Web Master series. Pediatricians as well as adult & pediatric nephrologists are invited to deep dive into the topic presented by Dr Sidharth Kumar Sethi - HUS: Newer Developments in Pathology & Treatment.
A tale of two aHUS diagnoses
Article No 390 1 November 2020 All aHUS patients at some point have been told they have got aHUS. It is…
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