aHUSUK is supporting other aHUS patient organisations around the world to get the highest number of aHUS patients ,or their parent/ carers, to contribute to the first ever global poll (survey) of people living with aHUS.
An easy to complete questionnaire has been designed to gather, in 29 questions, some key rare disease information about aHUS; including diagnosis ,treatment ,research, quality of life impact ,commissioning and information on the disease. In order to include as many patients as possible, it has been translated into five other languages.
aHUS Patient organisations from five continents ,including aHUS Alliance members from Australia, Canada, Europe, South America & Russia as well as the Foundation for children with aHUS in the USA, will be promoting the survey,or poll ,to get as many responses in the next few weeks around Rare Disease day 2014 to make it a unique and extensive “position statement” about aHUS in 2014.
Access to the survey, which is being hosted by EURORDIS on its aHUS community within the RareConnect website can made by clicking on the RareConnect image below. It takes less than five minutes to do.
Robert Pleticha of EURORDIS says that “Results will be utilized to help patient groups understand the needs of their members ;anonymised data will be available to everyone on RareConnect; to help understand the differences in aHUS care, diagnosis, and treatment access around countries-and to raise awareness of the concerns of people living with aHUS on social media”
aHUSUK believes this to be a very significant event for the world of aHUS, and advocates that all people living with aHUS in the UK complete the survey and contribute to global knowledge about aHUS.