We were successful in applying for a €30,000 grant from the European Union to hold the 5th European Aniridia Conference! 

Our co-applicants and stakeholders around Europe deserve a huge thank you for their help with this achievement! They are now jointly responsible with us for using it properly.

We met with them to get help with deciding what to do about the conference and making it a success.

The grant was for holding the event in London in 2020, including clinics at Moorfields. Because of COVID-19 we have rescheduled the event for July 31-1 August.2021. This is close to the final deadline for using the grant money.
However COVID may cause a conference of 250 delegates to be prohibited, or many people may be unwilling/unable to (pay for tickets in advance and) travel to the United Kingdom

We will plan for a physical conference, but must also plan for an entirely virtual event or a hybrid of both methods. For example, some of the speakers could meet in person and interact with delegates online.

Hosting a series of large webinars professionally will still cost money, especially if we want to pre-record them and do other engaging activities.

To be able to use the €30k grant for this we must meet the objectives of the funding set by the European Joint Programme for Rare Disease Netwroking Support Scheme:

  1. encourage sharing of knowledge on aniridia among health care professionals, researchers and patients. 
  2. enable or increase participation of underrepresented countries in Europe in new and existing/expanding research networks on aniridia 
  3. workshops or conferences to support existing/new research networks to enable exchange of knowledge, (implications of) research results and innovative solutions 
  4. strengthening the collaborations between different stakeholders to encourage future collaborative research efforts.

We discussed how we can achieve this most effectively online? 

  • How can we especially involve people from: Armenia, Bulgaria, Croatia, Czech Republic, Estonia, Georgia, Hungary, Latvia, Lithuania, Malta, Poland, Romania, Serbia, Slovakia, Slovenia and Turkey?
  • How do we sustain interest and engagement?
  • What has worked well at other online conferences you have taken part in recently?

Broadly we decided to try to:

  • plan for a virtual event as well as a physical event if possible around 30 July-1 August 2021
  • all ask our workplaces or contacts if we could use their licensed conferencing software systems such as Teams, Zoom 
    (This donation could perhaps be recognised similarly to sponsorship).
  • exploit the online aspect with
    • wider appeal to people from underrepresented countries and early career scientists/doctors via social media and cascading messages through local organisations, 
    • reduced ticket prices if possible
    • virtual tours of clinic/lab facilities at various institutions, not just Moorfields
    • later or parallel sessions (assuming recording will be available afterwards) for target groups
    • way for lay people to ask questions and get explanations of technical language and concepts 
    • pre-recorded talks and live Q&A
    • make more use of talent around the world, to help organise the event. 
  • adapt to online by:
    • discussing controversial topics to stimulate conversation!
    • invite questions in advance, to prime discussions with one or more experts
    • getting under-represented/early career people to present about their work, or challenges, or speak to peers to spark conversations on how to make progress 
    • virtual consultations

Please talk to us if you have any questions, ideas, clarifications or ways to help make this all happen. 

European Aniridia Conference logo

Special thanks goes to Veronica van Heyningen, Nikki Hall and James Buller who jointly wrote the excellent grant application to the European Joint Programme for Rare Disease Netwroking Support Scheme in within a very short time.

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