aHUS at the Cleveland Rare Genetic Disease Symposium
Cleveland Clinic Children's held its Rare Genetic Disease Symposium on 12 Sept 2019, with 3 aHUS-specific presentations to include the aHUS Alliance on the topic of 'The Patients' Perspective'.
aHUS Registry Report : RaDaR
Patient Registries are important for those with rare diseases. aHUS is served by several Registries. None are perfect either because of…
2019 Atypical HUS Fact Sheets
Atypical HUS: Fact Sheets & Research (2019 - SEPT - 2020 Edition) The aHUS Alliance provides informational resources about this rare disease for aHUS families & advocates around the world. Highlight boxes of aHUS research from the past year are provided in the full version, Key Facts and Research. The 'aHUS: In Brief 2019' version is a single page of aHUS facts to Print & Share.
A Seminal article on Global aHUS in 2019
An article about aHUS was published yesterday. It appeared in the International Journal of Nephrology and Renovascular Disease. Its title is…
Really, isn’t everyone aware of aHUS by now?
Look at any charity/ not for profit organisation related to health and the term “awareness” will be there in what they…
An aHUS Patient Entrepreneur ?
After reading an inspirational article* about Kamal Shah , which featured on the alliance’s social media recently, I was reminded about…
aHUS Registry Report: (aHUS) Registry
The alliance relationship with the atypical Hemolytic-Uremic Syndrome( aHUS) Registry (NCT01522183) is now well into its fifth year. This observational non…
Eculizumab Safety
Following on from its recent article about the safety of eculizumab ( see here ) the alliance has looked at two…
“Away from home” Eculizumab infusions
Within the aHUS Patients' Research Agenda is a topic about how aHUS affects work and school. A big question with so…
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