Aniridia Network

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.

Dr Petch

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.”

Recordings of all the presentations are available on YouTube.

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
general”

“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
useful information.”

“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.

Thank you for all the excellent feedback about this years conference. We will certainly try to put in place many of the suggestions that were made. We will publish the survey results shortly.

There were some points made, that we want to respond to; to dispel any misconceptions and explain why things are done the way they are.

Cost

“I am surprised that the event cost so much to put on. Assuming that the speakers did not charge for their services, I would have thought a cheaper venue of similar quality could be found – maybe outside of London?”

The speakers did not charge to appear. In fact those who were also delegates, paid to be there. We do extensive searches for suitable venues in every city we visit. Resource For London, with it’s discount for charities, is easily the cheapest compared to others of similar quality, facilities, size and accessible location. Catering is the largest single expense even though we choose budget menus. The total cost of just under £6,000 is similar to the conferences we have held elsewhere in the country including Bristol and Newcastle. We cover half of this cost from fundraising income to allow ticket prices of £21 instead of around £45 for adults.

We would love to hear of more low cost conference venues, close to major transport hubs, with capacity for 100 people in cabaret style, plus rooms for the creche and exhibition.

Structure of the day

“The afternoon break could have been shorter, particularly as some of the speakers had left by then.”

We of course hope that speakers will attend for the whole day, to talk with delegates. But their other commitments often only become apparent close to or on the day of the event.

Our feedback surveys of previous events are consistent that most delegates want long break times, because they value the opportunity to meet with others so much. Indeed this year the break times were the most highly rated element of the event! 62% said the agenda gave the right balance while 19% wanted more time to talk.

There have been suggestions to facilitate introductions and also timetable opportunities to chat as alternatives to talks that are less relevant to some delegates. We will look into these good ideas for future events.

“Split the conference into (parallel) sections according to the stage of life the talk is connected to.”

This is very difficult to get right. Many topics are applicable to a range of people. Parents of children with aniridia for example are in both categories of what initially appears to be a obvious segregation.

In the past we have tried running two sets of talks at the same time. Some people complained that they were unable to attend both sets. Repeating the talks is essentially the same as a single track yet increases the burden on speakers, potentially room hire costs and the complexity of having sight impaired delegates moving around the venue.

The timing of presentations is also often influenced by other factors such as length of the talks and slots, and the availability of the speakers. Lastly there is the desire for a sensible sequence so that the day flows well.

Annual General Meeting

“I thought the AGM slot could have been shorter”

“Have the AGM at the end of the conference so those who who do not wish to attend the meeting could leave earlier to travel back home”

We are required to hold the AGM, legally and to be accountable to you, our members. If less than 5% of members (about 30-40 people) attend it, the AGM is not valid. Therefore we have to hold it in the middle of the day, precisely to avoid people skipping it.

We do streamline it but should actually spend longer on the elections to be diligent.

As James described at the end of the AGM, one option is to change our governance model to be a trust, where members and AGMs are not required. This would solve one issue but could create others. We’d love to hear your thoughts on this.

Presentations

“Provide speakers helpful tips on audience, language and presentation of information so that each talk is beneficial to the majority.”

“Hold a rehearsal to give feedback and fix volume problems.”

We do indeed tell speakers to cater for parents, patients and professionals with different levels of understanding and so the need to use simple language. We also provide guidance on designing accessible slides, such as about contrast and font size. Plus we tell them to describe any images.

We do ask for slides in advance and in the past have sometimes organised run throughs, in a bid to catch problems. These are all subject to the speakers submitting their slides on time and their/our availability in advance and on the day.  We will continue trying to improve this, for example the great suggestions of referring presenters to a good example videos or even seeking advice from Fern!

Glen’s talk

“I think it was a shame that Glen Turner’s session was removed from the agenda.”

Yes it was a shame. Due to overrunning by previous speakers we were late by 30 minutes, the same time scheduled for Glen’s talk. Glen’s speech about his life with aniridia was only included at the last minute due to a cancellation by a doctor who was due to appear. So it was not advertised for most of the ticket sale period. Glen’s talk and other videos can also be viewed on YouTube and we had another talk from a patient scheduled: Fern. Lastly, having spoken to Glen  we were confident that he would be able to talk at a future event instead.

Dog bowls

there seemed to be no bowls/water for guide dogs. I know people could bring their own, but this can be difficult.

There were two water filled dog bowls but we admit that we didn’t highlight them. We will add it to our list of things to to tell delegates at future events. We’ll also try to arrange more volunteers to take dogs for walks to spend.