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. 367 8 August 2020 aHUS Awareness Day 2020 is less than 2 months away! The world will join together on September 24, 2020 to raise awareness for aHUS.…
Article No. 361 24 July 2020 The world’s 6th annual aHUS Awareness Day, to be held on Thursday 24 September 2020, was created by the aHUS Alliance to share…
Article No. 349 14 June 2020 Die aHUS Global Action-Website hat mehrere nicht englische Artikel über aHUS aus der ganzen Welt veröffentlicht. Als einzige Gobal-Website über aHUS möchten wir mehr…
Article No. 348 10 June 2020 A few weeks ago saw an anniversary of the launch of this website. Not a big deal really. Just over four years ago a…
Article No. 345 20 May 2020 COVID 19 lockdown does seem to give more time to think about things, so the question "What is aHUS?" has been pondered to fill…
Article No. 342 6 May 2020 Thrombotic Microangiopathy & Precision Medicine What’s to be learned from the Pandemic? At various times in history, medical science has been catapulted…
Article No. 341 27 April 2020 When news about the rare disease ‘atypical hemolytic uremic syndrome’ (atypical HUS) appears in medical journals or social media, the aHUS Alliance seeks to…