Today I took part in a lightning talk at the Findacure virtual Rare Disease Showcase.
Findacure have been hosting rare disease events for a number of years, and regular readers may remember that I went to their drug repurposing conference in 2016 (yes, there are posts here about that). One of the support group trustees suggested that I talked about the needs identification which I'm covering in this years survey, and that idea was liked by Findacure, so I was up.
Regular readers will note that I usually write up various points and observations from these meetings, however project commitments at work meant I was only able to attend today. I was working on a range of other support group activities this morning, so I was listening to a few of the other talks in the background.
My key takeaway from those talks were the discussions around how social media can be both a blessing and a curse. A study was being talked about where the participants were sharing their experiences during the trial on social media. The result of all the attention was that even those in the placebo arm of the trial showed changes, and hence the study couldn't demonstrate what it wanted to.
For the lightning talks round I was one of five presenters, and I volunteered to go first. There were a few teething issues with my technology which meant that I went a little faster than I wanted to and finished in 4 mins 26 seconds. It was really good fun to take part in!
I had taken the approach of going for five minutes, five things to say:
- What is HSP
- How does HSP affect people
- Available support networks
- The approach to needs identification
- Some early results
The other four presenters were telling the stories of their rare disease experiences, and it was insightful to hear that actually those with rare diseases are often in the same boat - trouble with diagnosis, trouble finding information, trouble finding treatments. Everyone was really friendly, and there were some interesting questions at the end. In summary, great fun!
I'm hoping to get the recording of my five minutes for youtube!
I am quite pleased with my support group network map:
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