Project Description
The National Alliance for Rare Diseases Support – Malta attended the Rare Diseases Europe Roundtable 2017 in Brussels organised by the International Centre for Parliamentary Studies on 7 November 2017.
This roundtable meeting brought together EU policy makers, medical and clinical professionals, academic experts, healthcare payers and patient groups, in order to examine current policy guidelines and strategies to support member states in diagnosing, treating and caring for EU citizens with rare diseases.
Topics addressed included the following:
- Current policy framework of rare diseases in the EU and Member States
- Current screening population practices
- Recognition and visibility of rare diseases
- The new European Reference Networks (ERNs): what can we expect from them?
- Encouraging further research into rare diseases and ensuring rapid translation of research results into clinical applications
- Increasing the development, authorisation and early patient access of orphan drugs
- E-Health and telemedicine: what is the best way of adopting these new technological developments?
- Supporting rare diseases registries and providing a European platform for rare diseases registration
