Advocacy for aHUS and “aHUSs”
When it comes to advocacy why say there is aHUS and there is also aHUSs? The rare disease aHUS is described…
Mastermind on aHUS
Imagine atypical haemolytic uraemic syndrome or aHUS on a well know quiz show, say Mastermind. How would it look?--- The Mastermind…
Is there a PDA for aHUS treatment continuation?
A PDA or patient decision aid is becoming an important part of the increasing shared decision making by patients and doctors.…
Real world data on aHUS treatment discontinuation
A few days ago an article appeared in The Lancet which claims to be the largest real world analysis of complement…
A chat about the Ravu-Pregnancy Registry
Recently I wrote an article about a clinical study which is an Ravulizumab pregnancy registry in the USA. Then tried to…
India: Eculizumab Approved by CDSCO for aHUS & PNH
After years of waiting, eculizumab Soliris(R) has been approved by India’s Central Drugs Standard Control Organisation (CDSCO) as an approved drug…
FDA has a record about aHUS
In 2023 a group from the aHUS community met with the FDA to talk to them about living with aHUS and…
Discontinuation – no longer needing complement inhibition
Complement inhibition treatment discontinuation is a topic that Global Action has led on in the aHUS patient advocacy world for several…
Treatment Discontinuation- do doctors and patients think alike?
Recently a novel article about complement inhibitor treatment discontinuation was published. Novel because of the research method used to produce its…
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