Publications about aHUS
Here you will in time find a comprehensive selection of published clinical research articles about aHUS and related issues . The list has been sorted by the main issue covered by the publication e.g. cause , treatment etc. There are links on the list which can be clicked to take the viewer to the abstract or in some cases the full article.
Click here to view a list of publications relating to aHUS.
aHUS alliance Global Action Research reports.
Ecu and Ravu experience
Life experiences of aHUS patients , families and carers in England and Wales
Leaflets
Find documents produced by the alliance, sometimes in partnership with other organisations, about aHUS and related matters.
The draft aHUS Agenda
Clinical Tracker
Research and Registries 2016
A tribute to Professor Conrad von Gasser
White Papers
Access to aHUS Treatment: 2016 aHUS Global Poll White Paper – click here to view
aHUS and Dialysis Insights: 2016 aHUS Global Poll White Paper – click here to view
aHUS Global Polls
2016 aHUS Global Poll
2016 aHUS Global Poll: Survey Questions
Overview of the aHUS Global Poll: Methodology & Insights
2016 aHUS Global Poll – RESULTS
GRAPHS and Info for Questions 1-15
GRAPHS and Info for Questions 16-30
GRAPHS and Info for Questions 31-45
2014 aHUS Global Poll
In partnership with RareConnect, aHUS patient organizations in multiple nations launched a 2014 global poll of aHUS patients and caregivers. Open from 17 February to 7 March 2014, the survey provided information and insights from 214 respondents, replying in 6 different languages across 17 nations.
Click here to view the results of the survey.
Click here to view an infographic summarizing the results.
2014 aHUS Global Poll – RESULTS & Commentaries
Click here to view a webinar on the Survey by Prof. Tim Goodship from the University of Newcastle, UK.
Click here to view the slide deck used by Prof. Tim Goodship in the webinar above.
Click here to view a commentary on the survey results by Len Woodward, Secretary, aHUS UK.
Click here to view a blog on the survey results by Linda Burke, member of the aHUS Alliance.
Fact Sheets & aHUS Patient Education Materials
Know aHUS – Know Us (Available in 3 languages: EN, FR, ES)
An overview of basic aHUS Facts, with information & insight on what it’s like to live with the rare disease atypical HUS. Print-friendly document (1 page, double-sided) to share at events or meetings, at work or school, or with friends and family members.
Graphic: How rare is Atypical HUS? (Available in 3 languages: EN, FR, ES)
aHUS Fact Sheet, Brief version (Sept 2018) – click HERE to view/print (pdf) aHUS Basics on a single document, to share at meetings, with school personnel, or with employers. One page (two-sided) of aHUS Facts
aHUS Facts & Key Info – Full version (Sept 2018) – to View, click HERE A detailed version of the brief aHUS Fact Sheet, this extended version contains links to MORE: key research (with citations), information about clinical trials and potential new treatments, and additional resources.
Press Kit: aHUS Alliance
YouTube
Atypical HUS Clinical Channel Main Playlists
aHUS Global Patient Voices Main Playlists
aHUS Therapeutic Drugs – R & D Landscape 2018
Other Info & Documents
Click here for a report on the European only responses to questions about aHUS.
Click here for a report on the Research and Registries responses from aHUS patients and carers.
Click here to view a 2013 Fact Sheet from WHO about Global Rare diseases.
