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?
Article No 395 25 November 2020 This was a call to action to the Global aHUS community.( Results to come) It…
Article No 394 23 November 2020 In an article on 16 October 2020 (No 388) aHUS Global Action derived a cost…
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?
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.
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.
Article No 390 1 November 2020 All aHUS patients at some point have been told they have got aHUS. It is…
Article No. 369 12 August 2020 Recently when preparing an article about USA aHUS patient numbers ( see Article 362 )…
Article No. 367 8 August 2020 aHUS Awareness Day 2020 is less than 2 months away! The world will join together…