Hope for aHUS in India?
Tomorrow, and the day after, a significant event is taking place in New Dehli which is of great importance to aHUS Patients…
Things can get better
Most who have had an encounter with aHUS will be familiar with the anxiety and uncertainty felt by Deborah in her…
Parents Want to Know about aHUS Childrens’ Issues
Exploring your Questions, Rare Disease Day 2017 Children living with the rare disease atypical HUS are first and foremost children. Despite…
aHUS Rare Disease Day Video 2
Like the "Rocky" films, the alliance Rare Disease Day video has a follow up version as more people from more countries…
Can eculizumab be stopped?
For many thousands of aHUS patients around the world just getting access to eculizumab is the most pressing issue; but, increasingly,…
Long term side effects of treatment
Other questions featured in the Rare Disease Day video about the aHUS treatment eculizumab, relate to side effects from infusions of…
Allergy and Immunogenicity Revisited
After the pause in answering the Rare Disease Day video questions to consolidate them into the aHUS Patients Research Agenda; and…
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…
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