Submissions for posters have now closed.
If you have any questions concerning your poster, please contact:
Alice Williams ([email protected])
Events & Communications team
EURORDIS-Rare Diseases Europe
The themes mentioned below suggest issues and topics the Programme Committee would like to have addressed and should serve as a valuable guide as you develop your poster abstract.
Reports on how research is shifting the approach to diagnosis; ways in which patients are being trained, educated and empowered in research; examples of bioethical research on the impact of genomic medicine; examples of co-design between patients, academics and industry; innovative models of patients’ engagement in research & research funding.
Compassionate Use Programmes for Rare diseases products: descriptive analysis, scope, timelines, data collected, results; Industry experience with the Priority Medicines Scheme at the European Medicine Agency (PRIME); HTA agency experience or Industry experience with parallel EMA/HTA Scientific Advice; HTA agency experience or Industry experience with EUnetHTA joint HTA reports (pharmaceuticals or non-pharmaceuticals). Patients involved in HTA at national or European level: description of the process, contribution made, impact. Community Advisory Boards of patients’ advocates (CAB): your experience in creating and running a CAB, or industry experience interacting with a CAB. Innovative methods for health economic assessment. Patient Organisations Horizon Scanning
Breakthroughs in digital innovation in healthcare; examples of patient-led digital revolutions; reports on the digital transformation of the healthcare system including experiences from hospitals, healthcare providers and patients, highlighting successes and failures to be learnt from.
Reports of patient perspectives on quality of life; methodologies to define quality of life indicators and outcomes; case studies of meaningful integration of quality of life indicators in the design and evaluation of treatments and services; case studies on Case Management; innovative services, policies or practices to implement integrated care for people living with rare diseases; next practices to guarantee better quality of life to people living with rare disease and their carers, such as futuristic policies, services, and technologies.
Studies on the burden of rare diseases, the cost of illnesses (individual diseases and on an aggregated level); examples of the application of value frameworks to access decision; the assessment of feasibility of new approaches to funding; looking ahead to the next decade: -challenges & opportunities.
Examples of how you are working towards building greater international synergy to make a difference at global, national and local levels.
Reports on experiences and best practices of European Reference Networks, national networks and Centres of Expertise; examples of how ERNs and national networks have developed, from seed to success; examples of how networking has significantly improved care for patients; reports on experiences or results of studies on what kind of clinical outcomes and data are relevant to measure benefit for patients; outcomes of national and European rare disease specific patient registries; good clinical practice guidelines; reports on experiences of eHealth platforms; new mHealth (mobile) tools to interest patients; reports on experiences and best practices for e-prescriptions; experiences on how to connect networks to local (national or regional) healthcare systems; reports on experiences of educating healthcare professionals and patients learning from each other.
Innovative strategies/approaches/services or projects which could potentially be useful to other patient groups/healthcare professionals/academia or which deserve to be promoted internationally and recognised by national and European authorities.
What would you like to say about your disease, your actions, your vision?