Hello readers.
I have found myself relatively busy in the last few months, and I realise that I have run out of time to plan, organise and translate my usual annual survey for this year. Therefore, I've made the decision not to run a survey this year.
Instead, I will collate a summary of all 10 previous surveys together and publish that on rare disease day next year. I will be able to highlight the key themes and findings over all surveys and draw some attention to aspects changing between years for some people.
With any luck, by the time I get to the summer of 2024 I will be less busy and able to run another survey with questions.
As an aside, This somewhat messes up my pattern of surveys, as I was planning to repeat some of my first questions (from the 2013 survey), but there we go - I will just have to accept that its not going to work like that.
Whilst you are here, have a look at the EuroHSP project: https://www.eurohsp.eu/eurospg4 - They are seeking donations for this project. Use the Donate option at the top of the screen.
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