We ran a quick online survey about participation in Aniridia Day 2018.
25 people responded, 11 of them from the United Kingdom.
Here are the results.
- 88% read social media posts
- about half posted on social media as part of the #AniridiaSight campaign or more generally about aniridia
- less than half listened to webinars. Most of these listened to just 1, but some up to 5
- 6 people rated the day negatively and 18 positively. 8 gave it maximum positive rating
People said they liked:
- sharing: knowledge/stories/experiences/accomplishments/struggles
- sense of: togetherness, unity, not being alone, positivity, ‘awesomeness of our rareness’
- getting practical information such as contact details, research news and treatments
- raising awareness
One person said:
“It was a special day, because so many people like me came together and chatted on an online. Everyone seemed so confident and it was clear they had high goals and resilience. Everyone was collectively spreading awareness of aniridia and fighting for their rights, such as research, less stigma, independence and equality.”
Things that could have been better included
- earlier notice and instructions for organising activities and contacting members and doctors
- better publicity of webinars and clearer instructions on how to join in on different devices, including and the need to register or not
- clashes with other small charities special days
- some with no sight felt excluded from #AniridiaSight campaign
For the next Aniridia Day people want:
- more opportunities to meet other people locally
- more, shorter webinars mainly by doctors
- fundraising activities