The atypical HUS Foundation has just released a very informative brochure about the disease. The brochure can be downloaded from here.
The brochure explains the disease in simple terms and also talks about the types and the treatment options. It also has some stories of people affected by this disease. (Hint: See Page 5 of the brochure!)
It has been put together by the Foundation for Children with Atypical HUS, a group of people whose children have been affected by this disease. It also has some adults (like me) who have aHUS.
This is a very rare disease and some 300 children and a handful of adults in the US are expected to have it. It requires a very dedicated team to do any kind of research on diseases such as this because there is hardly any bang for the buck, so to speak. So, only the very academically inclined who really have a deep interest in this class of diseases or the underlying phenomena get into this.
For diseases that are more 'mainstream', any work by researchers yields a lot of benefits simply because of the volume of patients that would benefit from the work.
It is through this foundation that patients such as me can come to know about all that's happening in this small world of aHUS.
The brochure explains the disease in simple terms and also talks about the types and the treatment options. It also has some stories of people affected by this disease. (Hint: See Page 5 of the brochure!)
It has been put together by the Foundation for Children with Atypical HUS, a group of people whose children have been affected by this disease. It also has some adults (like me) who have aHUS.
This is a very rare disease and some 300 children and a handful of adults in the US are expected to have it. It requires a very dedicated team to do any kind of research on diseases such as this because there is hardly any bang for the buck, so to speak. So, only the very academically inclined who really have a deep interest in this class of diseases or the underlying phenomena get into this.
For diseases that are more 'mainstream', any work by researchers yields a lot of benefits simply because of the volume of patients that would benefit from the work.
It is through this foundation that patients such as me can come to know about all that's happening in this small world of aHUS.
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