Article No. 409
9 January 2021
aHUS alliance Global Action has entered the new year with global aHUS activity in full swing.
The usual Rare Disease Day support is being given with one of biannual videos ( the other is aHUS Awareness Day 24 September). More information for anyone in the aHUS community considering joining in on the video HERE.
aHUS Global Action is already providing patient voice evidence to two national health policy evaluations of ravulizumab to replace eculizumab. It is able to do so because of those in the aHUS patients community who answered the call for help last year.
The result of their participation was a powerful piece of research which can be used by other patient organisations as evidence of what patients think about transitioning from eculizumab to ravulizumab. Indeed in any country considering the switch from eculizumab to ravulizumab. More about that HERE.
The experience of aHUS patients assisting in the comparison study is a practical demonstration of why together we are strong as the Rare Disease slogan states.
There is other research which the aHUScommunity can do by itself for itself to make a noise and raise awareness. One that the aHUS set aside last year because of COVID will address family member issues which has not been done before. Global Action will return to that later in the year.
Meanwhile our major initiative , as the year begins, is the aHUS Diagnosis Process Study. When rare disease research is done it is usually based on small number of patients because of its rarity. To get 30 participants is an achievement.
In a similar study by a Lupus organisation a few years ago it achieved a remarkable response from over 3000 patients. But that 3000 was out of a potential patient population of 1.5 million. Lupus is a disease with a much larger prevalence than aHUS but with similar diagnosis issues.
There may, all told, be only 15000 to 20000 aHUS patients globally.
So at the Lupus community’s response success rate, the aHUS community responses would be about 30 to 40.
With 10 days to go before the questionnaire is due to close, the aHUS community response has smashed that target several fold. The data from this reseaerch is going to be powerful.
The more responses about our rare disease diagnosis we get , the more powerful the patients’ perception and experience voice is going to be when presented.
So anyone who has not participated yet is very welcome to add their experience . You have until the 19th January to do so. The questionnaire can be found in the “Help us join the aHUS dots” article HERE.
Despite aHUS and COVID19, aHUS Global patient advocacy has hit the ground running in 2021, so much is to be acheived yet
