More from the reluctant advocate. The July meeting of NICE left us worried. The meeting had been held on 23rd July as planned. I attended with my fellow aHUSUK Trustee…
One mother’s personal story about her young son’s diagnosis with atypical HUS. Connected to the broader themes of what happens after a rare disease diagnosis as working parents strive to navigate, childcare, emotional stress, and family impacts.
The Dutch aHUS patients' conference is being held in Nimegen and the participants are gathering at the Fletcher Park Hotel Val Monte for the talks. The attendees are a mix…
Following aHUS India's response came two replies from The Netherlands and UK in Europe. Their expectations reflect a very different position on the timeline of access to eculizumab i.e. if …
Earlier this year the alliance began a watch on trials announced which relate to treatment of aHUS. Click here for the previous news item An additional trial has been announced…
There is another very good question from Hyde Talbot of Cumming Georgia in the video ( click here to view video). " When will there be a…
The KDIGO Controversies Conference on Complement-Mediated Kidney Disease was held November 19-21 2015 in Barcelona Spain. KDIGO’s mission is to improve global outcomes for kidney disease, to include this…
An article entitled "An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry" has appeared in the Orphanet Journal of Rare Diseases in which the aHUS alliance has…