Why me? An answer at last!by
I recently stumbled upon a site for atypical HemolyticUremicSyndrome (aHUS), the disease that I have. It is such a rare disease - there are only about 300 people who have this disease in the US. A very small part...
Hopefully, some day...by
A video of a young little boy diagnosed with Atypical HemolyticUremicSyndrome, the disease that I have, being given the wonder drug, Eculizumab
Tomorrow is Rare Disease Dayby
I have a disease called Atypical HemolyticUremicSyndrome (aHUS). This disease is classified as an Ultra Rare Disease - less than one in a million adults are estimated to be affected. The problem...
Today is Rare Disease Dayby
I have atypical HemolyticUremicSyndrome (aHUS). In the US, there are only about 300 people who have this disease. Most of them are children. Adult aHUS is even more rare. I am not aware of any statistics...
Soliris - do we really need to wait?by
My primary kidney disease is atypical HemolyticUremicSyndrome (aHUS). This is a very rare disease in adults. It is more common in children. The problem with rare diseases is that they do not...