European Join Programme Rare Diseases

This conference is kindly funded by the European Joint Programme for Rare Disease Netwroking Support Scheme. One of their objectives is to:

enable or increase participation of underrepresented countries in Europe in new and existing/expanding research networks on aniridia 

These countries are generally small or eastern European:
Armenia, Bulgaria, Croatia, Czech Republic, Estonia, Georgia, Hungary, Latvia, Lithuania, Malta, Poland, Romania, Serbia, Slovakia, Slovenia and Turkey.

For patient, parents, healthcare professionals and researchers in these nations, we need the conference to:

  1. encourage sharing of knowledge 
  2. support existing/new research networks to enable exchange of knowledge, (implications of) research results and innovative solutions 
  3. strengthen the collaborations between different stakeholders to encourage future collaborative research efforts.

To do this we are exploiting the online aspect of confernece with

  • wide appeal to people from underrepresented countries and early career scientists/doctors via social media and cascading messages through local organisations, 
  • free tickets
  • 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. 
  • a session for early career scientists in under-represented countries to present their work
  • sessions aim at building stronger patient association in areas where they are lacking
  • parallel networking room for discussing ideas and challenges with peers to kick start progressvirtual consultations
  • prioritisation for online consultations
  • recordings available afterwards

Please talk to us if you have any questions, ideas, or ways to help make this even better for those in under-represented countries.