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
Regarding the first request: there is no way for us to arrange meetings centrally. They are entirely down to you to organise. It is very simple: you just choose a suitable time and place and perhaps a fun activity too. We can then help you publicise the event. But if you want more meet ups you must make them happen yourselves.
Overall It is clear that we are doing the right activities. However we need to do better at getting more people to take part, especially in non-English speaking countries. This requires more volunteers and engagement by the associations in those countries
Thanks to everyone for answering the questions.
Together we can make Aniridia Day even better next time!