Like the “Rocky” films, the alliance Rare Disease Day video has a follow up version as more people from more countries have asked to be included since the video was launched.
The gentle approach of the video allows the viewer to see the face behind “the aHUS patient” and find out what is important to them about the disease.
The video has, in an open and respectful manner, given the participants a visible voice of inclusion in the research agenda for aHUS .
The video questions plus the responses from the 2016 Global Poll along with the alliance’s research project ,published in the Orphanet Journal of Rare Diseases , provide a representative sample of topics which the patient community want to be researched and answers found.
“Representative” because there are potentially over 15000 aHUS patients around the world. So many of them, either were not aware of the opportunity to participate, or chose not to, maybe even thinking that those who did had said what they would have said,too.
Whatever the case the video did its best to stimulate fair inclusion and the resulting agenda is no less legitimate. In any event the best agendas change with time.
The reaction to the responses that the alliance has given to nearly half of the questions so far has been remarkable.The responses themselves have stimulated even more questions as we all continue to learn.
The alliance is lining up a number of experts to respond to the remaining issues of transplant, pregnancy , remission, TMA , genetics and others ; including that question from Romania about what is going on in the body when aHUS attacks!
So come back occasionally and see what is new; because this does not end when the all the Rare Disease Day questions have been responded to.
The dialogue, having begun , must then move forward to influence aHUS research priorities, programmes and implementation, with increasing interaction between aHUS patients and their researchers. The complexity of that is undeniable; but then so was the challenge to create a patient specific agenda.
Meanwhile if you have not seen it yet ,or just want to spot the new faces, the video can be seen on Youtube at this link .