A month of ravulizumab use adverse events
The Food and Drugs Administration has a database of adverse events (AEs) reported for all the drugs in use. It is…
Plain language summary of an aHUS Clinical Trial
This is a plain language summary of the final article to be published about Stopping Eculizumab Treatment Safely Clinical Trial. The…
The rapid development of aHUS knowledge and its treatment in China
Until eight years ago China had no policy on the care of people with rare diseases. There were discussions about it…
Finding neighbours in aHUS Town Second Group
The second group of 30 countries in which there could be collectively around 2250 aHUS patients is listed below. The aHUS…
An exchange about aHUS genetic counselling
Hi I don't have the aHUS gene. Hi That is good, but there is no aHUS gene so you could not…
Finding new neighbours- Global aHUS Town
The search for more known neighbours in Global aHUS Town began this summer. At the start there were 59 countries where…
Idiopathic aHUS- so what ?
Hi Well that was another aHUS Awareness Day. Are you aware that 40% of aHUS patients have no known genetic cause…
Discriminatory rare disease reach on social media platforms
Is social media reach to aHUS patients and families hindered because of our disease’s rareness? Rare disease patients are so few…
Raising Global aHUS Awareness Everywhere
Raising aHUS awareness is built into the DNA of the aHUS alliance and has been from its outset and also for…