The aHUS alliance has put out its aHUS Awareness Day video for 2017.
72 patients, or family members, from 18 countries have said something which is important to them about aHUS , and which they think clinicians and medical professionals should hear.
This year’s video coordinated,and produced, by Jeff Schmidt of aHUS Rest of the World can be viewed by clicking here
For those who participated in this 2017 Patient Voice project for aHUS Awareness Day, ” speaking” to others around the world about what they think about aHUS is important . When they watch the video too they should find it fascinating to hear what others think about the same illness, and where they are coming from.
Whether its about a wish to live normally with the disease, get access to an effective treatment, having research on what matters to them, express the hardship of living on dialysis, going through leukemia treatment before an onset ,or just being “atypical of a the atypical” as someone said.
It will be the alliance’s duty now to reflect on the issues raised, as it is doing with the Patients aHUS Agenda from Rare Disease Day ( more about that in the coming weeks) , and ensure that it is reflecting the different perspectives and thoughts in a dialogue with medical professionals. The aHUS Dialogue.
