People at the Aniridia Network Conference 2018 said:
“It gave an opportunity to learn about different aspects of aniridia. It made me feel like I really belonged there.”
Meeting lots of people and having a good variety of speakers made it very enjoyable and informative – helped me connect.”
The results of our survey about the conference tell us that it was very enjoyable and successful. Below is a summary, or you view the full and graphical survey results in pdf format. We have also written a response to some of the comments received and other blog posts about the day.
30 people gave feedback, of who 17 are parents to someone with aniridia. Only 7 had aniridia themselves though.
The general consensus was that the booking process was simple, efficient and easily accessible. Nearly 90% said they were happy with the ticket price of £21 per adult
and £8.50 per child. This covered approximately 50% of the event costs. and fundraised money was used to meet the remaining £2,750 expenses. Two people said the price was too cheap and 1 too expensive.
93% were (very) satisfied with the overall event, leaving just 2 respondents who said ‘neutral’. This is a fantastic outcome and shows how valued the conference is and how important it is for us to put on.
All of the sessions were well liked. The ones rated as ‘very good’ by the most people were:
- ‘Living with Aniridia’ by Fern Lulhum 86%
- ‘Research into possible drug treatments’ – Dr Mariya Moosajee 83%
“Dr Moosajee gave a brilliant presentation of insight into the research that is being carried out, keeping it simple and free of jargon, allowing all to understand.
Fern’s personal account was truly inspiring, leaving all who attended with hope.”
The highest rating was for the lunch and break times! These gave opportunities to talk to other delegates and visit the exhibition stalls.
Over half of respondents felt that the event struck the right balance between presentations, opportunities to ask questions and meet other people. However over 27% (8 people) would have preferred more time chat.
This suggest suggests that people are mainly attending the conference to gather information.
“Thank you. I enjoyed networking:
- hearing from young people with aniridia who have achieved so much despite challenges they have faced.
- sharing our thoughts with other parents in the same boat
- meeting those I have spoken to in the past over email or read about on the Aniridia UK website.
I also got information about drug research and understanding how hard everyone is working. It made me feel optimistic.”
Most people felt a day is the right length for the event and preferred an evening social activity, though many want this to be part day time event.
The most beneficial aspects of the event were:
“The up to date medical information, meeting others affected by aniridia and the
positive nature of the whole event. Made me feel better about the condition in
“It was enlightening, heart-warming and inspiring to hear from individuals and their families about their personal stories and how they are supporting one another.”
In conclusion delegates said:
“We were so impressed by the level of detail to support those attending. It was a great, easily accessible building, which was easy to commute to both by personal and public transport. The venue was well catered, open and spacious. The staff were very helpful and efficient. A great idea to have staff able to meet and guide attendees to the venue, to operate a childcare facility and also to those that cared for the guide dogs. The stalls were informative and the food was scrumptious!”
“I recommended it to anyone who has aniridia, or parents of children with aniridia,
because it is a great opportunity to meet others affected by the condition and gather
“The event was well organised, and it is definitely worth it for me to attend next year.”
We want to thank everyone for coming to Conference 2018 to make it such an excellent day. And huge gratitude to all the volunteers who made it possible, especially to Dave our Conference Coordinator.