Theme 3: Share, Care, Cure: Transforming care for rare diseases by 2030 - ECRD2020
Fast forward 20 years and the very fabric of our national health and welfare systems will be unrecognisable, transformed by the disruptive innovation and technologies of our modern age. Even today, many of our everyday services have already been radically transformed – private hire car companies no longer own any cars (Uber), retailers exist without shops (Amazon) and mobile-only banks (N26) are now common place. Our healthcare and welfare systems will not be immune to these changes. The rule book for healthcare will be re-written, and the once familiar building blocks of our traditional hospitals will be transformed into a new suite of health and social care competencies, on-the-go and on-demand experts and virtual clinics.
The digital transformation of healthcare has the potential to bring great benefits for the rare disease community, but it will also create new challenges. Our thirst for knowledge and unwavering scientific advancements will place the diagnosis odyssey to our history books, with most rare diseases being diagnosed at birth or within the first year of the first symptom. This will culminate in improving health outcomes, and will result in a shift in population needs and the burden of care of an ageing rare disease community, facing different challenges of living longer with increased multiple co-morbidities. This survivorship effect will translate into a shift in our demand for different health and social services, as well as service competency. The adoption of technology, smart sciences and increasingly automated health will force an evolution in the role of both health professionals and patients. The line between health care, social care and research will become increasingly blurred and so will our expectations of how care should be delivered.
Theme 3: Share, Care, Cure 2030: transforming care for rare diseases by 2030 will explore the rare disease population’s needs in 2030-40, as well as the opportunities and the challenges of care provision of the future. The seeds of our future are already visible today, and the five sessions within Theme 3 will put a spotlight on emerging trends in best-practice, promising technologies, and cutting-edge thinking, and will showcase forward-looking services and their potential to be scaled-up and to transform the delivery of our healthcare.
- Prof. Alberto Pereira, ENDO‐ERN Coordinator; Head of the Division of Endocrinology, Chair Centre for Endocrine Tumors Leiden (CETL), Leiden University Medical Centre, The Netherlands
- Dr. Birute Tumiene, Institute of Biomedical Sciences, Faculty of Medicine, Vilnius University, Lithuania
- Matt Bolz-Johnson, ERN and Healthcare Advisor, EURORDIS
#ECRD2020 takes place uniquely online via an interactive online platform on 14 and 15 May and it is recognised globally as the largest, patient-led rare disease event.
- Payments via Bank Transfer: 1 May 2020 (23:59 CEST)
- Payments via Credit Card, Debit Card of American Express: 10 May 2020 (23:59 CEST)