European Conference on Rare Diseases 2020: Call for posters
The European Conference on Rare Diseases & Orphan Products (ECRD) will be held on 15-16 May 2020 in Stockholm. The event is organised by EURORDIS, and co-organised by Orphanet and 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.
Drawing together more than 800 participants from over 50 countries around the world, ECRD is where innovative solutions in the rare disease field are born. 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. The main theme of ECRD2020 is 'The journey of living with a rare disease in 2030', with the aim to inform and discuss the shape of a future ecosystem for rare disease policies and services.
The call for posters are open now until 10 February 2030 around 7 themes and an additional open topic:
Theme 1: The future of diagnosis: new hopes, promises and challenges
Theme 2: Our values, our rights, our future: shifting paradigms towards inclusion
Theme 3: Share, Care, Rare: Transforming care for rare diseases by 2030
Theme 4: When therapies meet the needs: enabling a patient-centric approach to therapeutic development
Theme 5: Achieving the triple A’s by 2030: Accessible, Available and Affordable Treatments for people living with a rare disease
Theme 6: The digital health revolution: hype vs. reality
Theme 7: Rare Disease Patient Groups Innovations
Registration for the even will open on 18th November, with early bird tarifs up to 20 March 2020. A patient advocate Fellowship Programme is also operated for up to 40 patient advocates to attend the event.
Patient involvement in European healthcare organisations
A book on patient engagement in healthcare organisation has just been published entitled How Patient-provider Partnerships Transform Healthcare Organisations which includes a chapter on the involvement of rare disease patients in healthcare organisations and services. The chapter specifically focuses on their engagement in european organisations and how the effect of their participation trickles down to the national level.
