THE DRAFT AGENDA
While beginning to give responses to the questions featuring in the Rare Disease Day Video, the alliance has also been collating…
Can eculizumab not work for aHUS?
There are three questions in the Rare Diseases Day video which ask about allergy and immunity to eculizumab. These may be…
Why some family members onset and others don’t?
A couple of questions in the Rare Diseases Day video are about something that aHUS folk often talk about whenever they…
Will there be alternatives to eculizumab?
Questions relating to alternatives to eculizumab for aHUS ,and where those developments were up to, featured within many questions about eculizumab…
Vision Issues & aHUS
It’s difficult for rare disease patients to find information about their condition and even more so for patients with medical…
Can we be strong after aHUS?
Two questions in the Rare Disease Day video address the same issue but from different perspectives. Pepe of Madrid Spain…
Can the price of eculizumab be justified?
Article No. 4 March 2017 ( See also article on affordability of Ravulizumab at this LINK ) Severine of…
Treatment for all with aHUS?
A question which featured a number of times in the Rare Disease Day video was about access to complement inhibitors for…
A cure for aHUS?
There is another very good question from Hyde Talbot of Cumming Georgia in the video ( click here to view…
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