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


Poster themes

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.

Theme 1: Structuring the Research & Diagnosis Landscape

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.

Theme 2: Breakthrough medicines on the horizon

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

Theme 3: The Digital Patient

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.

Theme 4: Quality of Life: making what matters, matter

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.

Theme 5: Economical perspectives in rare diseases

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.

Theme 6: Global Rare Equity: Are we there yet?

Examples of how you are working towards building greater international synergy to make a difference at global, national and local levels.

Theme 7: European Reference Networks

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.

Theme 8: Rare Disease Patient Groups Innovations

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.

Theme 9: Open Topic

What would you like to say about your disease, your actions, your vision?