The Rare Disease Day video, which was the latest collaboration project of the aHUS alliance, and in which 75 aHUS adults and children from 15 countries participated; provided the final piece in the jigsaw to create the aHUS community’s Patient Research Agenda.
The agenda has been compiled by taking the :
- aHUS Register’s agenda created by the alliance affiliate organisations ( copy of article at this link)
- aHUS 2016 Global Poll respondents suggested research topics ( more information at this link)
- aHUS 2017 Rare Disease Day Video questions ( see video by clicking here)
to produce a comprehensive list of research topics important to patients and their carers.
The alliance’s job now , whilst providing some answers to the questions in the Video, is to take the list and create a condensed version which will be turned into an alliance approved aHUS Patient Research Agenda document to give, and communicate, to the aHUS Research community.
Once that is done, the alliance will not only keep providing answers like Alaina’s ( click) ; but also will monitor breaking aHUS research news to see how it impacts on the Patients Agenda.
All this will appear on the website so it will be worth while checking back periodically.
For a disease community so small and with a disease so very rare, this has been quite an accomplishment and a remarkable legacy of Rare Disease Day 2017.
