A week of publicity!

So, this last week or so has seen me being involved in a couple of publicity activities.

One of the other trustees at the support group had recently suggested that we put ourselves forward for a couple of things, and these have been developing nicely recently.

We said that I would be prepared to do a five minute talk in one of the lightning talk rounds at this years rare disease showcase, and out of many, I was selected to do this. In the last week or so I have been working out what to say and what to show. My topic (as suggested by our trustee) was around using technology to identify the needs of those with HSP, so a perfect excuse to draw together lots of HSP strings together, including some of the early results from my survey.

If you wish to watch, you can still sign up for the virtual conference: https://www.findacure.org.uk/rare-disease-showcase/, and my session is on Thursday afternoon. Having had a look at the agenda, there are a load of other excellent sounding talks, a few of which I should be able to attend whilst I am there.

Also, we said that we were happy to take part in the Student Voice competition, and I was paired up with a student to talk about my experiences with HSP. The competition is here: https://www.findacure.org.uk/student-voice-prize/. We had a good chat and I was able to share many aspects (including some other early survey results!), and we should find out soon the result of that competition soon. If that essay is the winner, then HSP will get a mention in https://ojrd.biomedcentral.com/