ECRD 2020: More than 1400 members of the rare disease community are online!
The 10th European Conference on Rare Diseases & Orphan Products kicks off today for the first time in a virtual format due to the current COVID-19 pandemic. Over 1400 participants are participating in a rich programme, with speakers and poster presenters from around the globe and across stakeholder groups.
ECRD is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. Leading, inspiring and engaging all stakeholders to take action, the Conference is an unrivalled opportunity to network and exchange invaluable knowledge with all stakeholders in the rare disease community – patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators.
During this event, conference organiser EURORDIS-Rare Diseases Europe and co-organiser Orphanet are appealing to the EU and EU Member States to accelerate work towards EU policies to improve the health and wellbeing of Europeans with rare diseases, notably through collective decision making. In a press release published at the start of the two-day conference, the organisers explain how the recent experience with the COVID-19 pandemic has demonstrated to the wider public the challenges that the rare disease community faces on a permanent basis, an impact that is keenly felt on the health status, social life, and economic prosperity of this population. COVID-19, as rare diseases, knows no borders. The current pandemic thus reinforces the need for transnational cooperation, already detected as a vital strategy for rare diseases, as explained by Yann Le Cam, CEO of EURORDIS: “We must combine our capacities and power at the European level, to ensure health, equity and solidarity for every individual citizen. We appeal to national governments and the EU institutions wherever possible to increase efforts in the coming year and decade to collaborate across the board on relevant EU policies that will strengthen healthcare systems.”
The conference builds on the work of the ongoing Rare2030 Foresight study, which will deliver a comprehensive set of key recommendations to policy makers on how to improve rare disease policyin Spring 2021. Participants are taking the time offered by this conference to look to the future, and build it together. Ana Rath, Director of Orphanet highlighted that, “Now more than ever, the EU has a vital role to play in improving the health of its citizens. ECRD 2020 focuses on how to build policies and services over the next decade that will improve the journey of living with a rare disease for patients and families.”
The organisers communicate the hope that the EU and its Member States will act together and thus use the strength of cooperation to tackle the toughest of health and economic challenges.
A full report on the event will be provided soon in a full edition of OrphaNews International.