aHUS :Access to treatment-patient engagement-research agenda in 2017
Early in 2017 aHUS alliance has identified access to treatment as a key concern for patients, families, and advocacy groups. Access…
Another anniversary and reason to ring the aHUS bell
Prof. Conrad Von Gasser's cowbell has already been rung by nearly 100 visitors to the website; who also viewed the exclusive…
So is aHUS a rare disease? It is rarer than rare!
Is aHUS a Rare Disease? Good question when Rare Disease Day 2017 is nearly upon us.Well by the definitions of what…
Getting better aHUS treatment in South Korea- the battle has begun
Although only 26 people have been identified in South Korea as being genetically predisposed to aHUS ( given its population the…
aHUS RESEARCHERS AND PATIENTS : GOOD WILL COME TOGETHER
Patient engagement in research is a developing issue. For it to be successful there needs to be a mutual appreciation of…
Ring out the aHUS Bell for New Year 2017
During the first aHUS Awareness Day activities in 2015, Professor Bernard S Kaplan of The Children's Hospital of Philadelphia wrote a…
aHUS Diagnosis & Treatment – KDIGO Controversy Conference
The KDIGO Controversies Conference on Complement-Mediated Kidney Disease was held November 19-21 2015 in Barcelona Spain. KDIGO’s mission is to…
Where we are up to on aHUS diagnosis and treatment
As 2016 comes to a close, the output from the 2015 KDIGO Controversy Conference about aHUS and C3G ( MPGN &…
There is more to aHUS than kidney disease
An onset of aHUS although predominantly associated with kidney failure, as the "U" for Uraemic relates, the Haemolytic activity also causes…