aHUS Registry Report:ERKNET
The aHUS alliance has a long association with the Global aHUS Registry and has a place on its Scientific Advisory Board…
Dialysis Diaries: Diet and fluid restrictions
(Disclaimer: The information provided here is only indicative. Please check with your doctor or dietician for individual "best practices". There is no single…
ERKNET Patient Communication Failure Continues
Yet another ERKNet Annual Meeting took place in Heidelberg , Germany in May 2019. In over a month since it was…
Dialysis Diaries
Atypical HUS affects about 2-3 per million population according to some estimates. Eculizumab, sold under the brand name Soliris by Alexion…
2019 aHUS Awareness Day -24 Sept
24 September 2019 marks the 5th annual aHUS Awareness Day, created by the aHUS Alliance to raise visibility for issues and needs of those impacted by the rare disease atypical hemolytic uremic syndrome (atypical HUS or aHUS). 'Family and Community Support' is this year's theme, with a 2019 global Call to Action: Support for blood & organ donation.
aHUS Connection Information Collaboration
Although there may be a few earlier dates for posts written as we were experimenting in using the website, the official…
The Birth of HUS(s) 65 years ago
The aHUS alliance’s mission highlights the importance of patient organisations reaching out and connecting with and supporting aHUS clinical researchers, who in…
About aHUS: for Youth Leaders, Camps & Coaches
Activity-based programs are a great for children to explore interest areas, learn new skills, and enjoy interactions with other children. What should coaches, camp directors, and youth program leaders know when activities include a child diagnosed with a rare disease like atypical HUS (aHUS)?
Generium’s Elizaria: First Biosimilar to Eculizumab
Generium launches the first biosimilar drug to eculizumab, known as Elizaria. What is a biosimilar? What might this biosimilar mean for aHUS patients, and the physicians who treat them? The aHUS Alliance looks at the science behind biosimilars, as well as issues such as drug cost and access for those affected by the rare disease atypical HUS.
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