The conference was very successful, achieving its objectives.

Computer monitors showing panel session of the conference and chat

Delegates loved the “cutting edge and quality” talks that were “informative and an excellent way to teach those of us that have limited knowledge.”

One said “I very much liked that hearing about science was interspersed with patient experiences as well as other aspects like the schoolchild passport or the Erasmus program to integrate students with vision difficulties. I also liked that after each scientific session the research was summarized in lay terms.”

Another agreed that it was an “excellent mixture of senior and junior researchers, clinicians and patients and their relatives. An enriching opportunity to learn more about all of them and establish future collaborations.” “We scientists find this type of mixed participant event most inspiring and informative.”

The talk subjects were varied. We heard from researchers outside of the regular eye related sphere. They told us of new findings linking the genetic condition to brain issues and sleeping disorders. Scientists and doctors benefited from hearing the practical and emotional impact of their study and surgery on patients and relatives..

This was the 5th occurrence of the conference, but being online this time made it was easy to take part from anywhere in the world. This meant more people attending than previously, many for the first time “finally getting to hear first hand from the doctors“. “I was not sure what to expect. but this conference was incredible. I appreciate the richness of knowledge provided and range of perspectives”. 

“I enjoyed it, learned a lot and met people that can understand me as a patient with aniridia. It helped me to have more empathy, understand myself even more, gave me new perspectives, found out about new innovations and research, and reminded me that there is hope.”

There were 353 delegates mostly from Europe: (Note that categories overlap)

  • 58% affected by aniridia 
    • 23% patients
    • 39% relative
    •   3% patient and relative
  • 17% researchers
  • 16% ophthalmologists
  •   6% academics
  •   6% geneticists
  •   3% early career scientists
  •   2.5% vision scientists
  • 8.5% from 9 under-represented countries: Bulgaria, Croatia, Czech Republic, Estonia, Hungary, Lithuania, Latvia, Serbia, Turkey.
  • 36% from the UK
  • 25.5% from other European countries
  • 9% from USA

10 patients/parents (2 from Hungary and Lithuania) were delighted to benefit from 25 minute video clinics with consultants at Moorfields Eye Hospital. “It was a breath of fresh air. We received not only really good advice but also hope for our little girl.” 

We facilitated a meeting of representatives of the European Research Network ERN Eye group and European Cooperation in Science and Technology (COST) Action CA18116 to help them collaborate on aniridia. Regular meetings and developing a patient registry were discussed. 

The early career scientists who took part in the competition for the best short talk relished the chance to speak at an international event to raise their profile. “It was a great opportunity and I really enjoyed the experience.” 

One of the grant co-applicants from Lithuania hosted a session focused on advising activists in under-represented countries on how to run effective patient groups. Leaders from established organisations used their answer questions on a range of topics to give their insights and advice. 

As a result a delegate from the Philippines has started a support group to support Filipinos affected by aniridia.

An online text chat system had lively discussion alongside the presentation. We also ran a live networking room using Zoom. Both were well used by delegates to talk with the speakers and each other to ask questions, share insights and build relationships. 

Patients groups had a number of extra enquiries following the conference. Many included a desire to take part in medical research and asking detailed questions of doctors.

Recordings of all the sessions will be published on the Aniridia Network YouTube channel for more people to watch in coming years.

Statistics from the delegates’ feedback survey

  • Majority said learning about aniridia, meeting professionals and patients was (in that order of popularity) a ‘very important’ objective.
  • The event met everyone’s objectives – 72.5% ‘a lot’.
  • Everyone said the event improved their knowledge of aniridia – 58.8% ‘a lot’.
  • A majority (57.5%) met at least 1 new person.  34% more than 5 new people and 17% met more than 10.
  • As a result of the conference 44% are seeking to learn more. Nearly a quarter of people said they were doing each of these activities: 
    • contacting someone 
    • collaborating with someone
    • starting/planning new work.
  • Overall everyone rated the event positively: 69.2% said it was ‘Very good’.
  • Virtually everyone is enthusiastic about coming to the next EAC: 80.4% ‘Very enthusiastic’.
  • The Net Promoter Score was good at 60.8. It’s about likeliness to recommend the EAC to someone else: 
    • 9.8% Detractors (score 0-6), 
    • 19.6% Passive (score 6 or 7),  
    • 70.6% Promoters (score 9 or 10), 
  • Only 7% had attended a previous European Aniridia Conference.

While organising the event we deliberately created resources that could be re-used by the volunteer hosts of future instances, to make their task easier:

  • We created a logo and brand guidelines
  • Administrative documents and graphics are stored in the cloud
  • The conference website can be repurposed. 
  • Lists of contacts and social media accounts to send publicity for further description.

These will all be passed on.

The European Aniridia Conference was an enormous success despite adverse circumstance caused by COVID-19. As well as achieving the objectives we showed that an online event is not only viable but can be of high standard, have greater reach and be really effective.

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