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Burden of Disease Survey

Have Your Voice Heard

Survey on the Burden of Disease
Akcea Therapeutics have commissioned a survey from Trinity Partners to capture the lived experience of LPLD and the related conditions (increasingly known in America as FCS).

Please take the time to do the survey.

It is a very important opportunity for us all as it is the first time such a study has been undertaken and will be of immense benefit to patients, researchers, clinicians, drug developers and drug regulators helping to  shape future treatment options.

On completion the anonymised results of the study will be analysed and published in a journal with open access which will enable any interested reader or researcher to access the results at no cost.   You will be able to link through to the results from these pages.

The study will fill a very prominent gap in existing medical literature and will help to advance medical understanding of the impact of the disease, but it is important that as many patients contribute their experience to make the findings robust.

You can access the survey here

You can find a flyer about the study here

And a press release about Akcea Therapeutics here