There is now 7 days to go before the Global aHUS Poll is closed to further responses.
This year Global aHUS patient advocacy has once again sought insights about aHUS families living with aHUS as a rare disease from families themselves..
We previously did this in 2014.
On that occasion it was the first time that a Global picture of aHUS as a rare disease had been described by anyone.
So, this time it is also about comparing the two surveys and finding out what, if anything, may have changed in these past 10 years.
The questionnaire has been designed to be completed by
– patients,
– parents of patients,
– or by biological relatives of patients ( it is important also to understand what the wider family have to say.)
Each family can probably generate three or more responses.
The questionnaire is based on the 2014 version.
It covers the key factors that affect those with rare diseases including diagnosis, access to treatment, genetics, research and registries, information access etc. There are also some additional questions for more in-depth analysis.
The questionnaires can be found on aHUS alliance Global Action website by clicking on the image below.
There are ten language versions if respondents prefer to use non-English questionnaires. The data coming from all language questionnaires is identical.
Our intention is to publish the results in a well-respected journal about rare diseases. If the numbers are high enough there could be standalone national reports.
The poll closing date is 18 August at midnight Pacific Standard Time.
aHUS alliance Global Action is appealing to all who have not done so to spend just 15 minutes or so in the next 7 days to help aHUS patients and families everywhere.
The clock is clicking down.
If we all do a little together we can do a lot.
Click on the image to find and complete the questionnaire before the Poll closes.
Article No. 676
