Last week the AKU Society team attended the 10th European Conference on Rare Diseases 2020 (ECRD 2020), hosted by Eurordis – a charity that represents rare disease patients across Europe. Every two years the ECRD is held in a European country and attracts people from all over Europe and beyond to come together to network and listen to interesting talks about advances in health care, policy and support for rare diseases patients. The AKU Society has attended the ECRD in various forms since its inception and we see it as one of the most important conference we can attend.
This year, the ECRD was due to be held in Stockholm. However, due to the COVID 19 pandemic, Eurordis was forced to move the conference online. Although initially we were worried that the conference would be negatively impacted because of this move, it turned out to be a success.
The online system allowed more than 1,000 people to connect to an innovative portal that was split into exhibition halls filled with organisations that would exhibit normally, and a lecture hall that featured links to each talk. There were also areas to chat with other attendees and a poster exhibition area.
The talks were centered around six themes covering therapeutic developments and advancements in diagnosis to healthcare rights and the digital health revolution. CEO and Chair of the AKU Society Nick Sireau spoke during the second day of the conference in theme 4 ‘When therapies meet the needs: enabling a patient-centric approach to therapeutic development’. Nick talked about our experiences and what we learnt over the course of the DevelopAKUre clinical trials and the importance that needs to be placed on patients groups’ involvement in research, including the need for an independent funding scheme that would allow small patient groups to receive funding from pharmaceutical companies.
Although networking was an issue, the conference was brilliant. The model set by Eurordis and the organisers of ECRD 2020 has set the standard for how all online conferences should be held
We are also incredibly proud to announce that our poster ‘The first effective treatment for AKU: A collaborative, patient centric effort’ won first prize in the ECRD’s poster competition. Our poster beat more than 300 other posters to the top spot and was picked by an expert panel at Eurordis. The poster was designed to bring people’s attention to the end of our successful series of clinical trials.
It highlighted how integral the AKU Society was in the planning and running of the trials and how we ensured the patient voice was involved in every step of its progress. As part of the award, Nick spoke during the plenary session in front of 800 people about the poster and progress into researching nitisinone as a treatment for AKU. Other attendees agreed that our story is one of hope and is an inspiration to other patient groups looking to achieve what we have. You can view the poster below or email [email protected] for a higher resolution version.
