• Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

  • Slide

    Rare Diseases Europe Roundtable

    Wednesday 8th November 2017,

According to the European Commission, rare diseases currently affect 27 to 36 million people in the European Union, and as a result of the limited number of patients, and the scarcity of relevant knowledge/expertise, rare diseases have become a key health policy priority.

Due to the broad diversity of disorders, reaching a level of appropriate diagnosis and treatment can take years, often leaving the patient in a prolonged period of uncertainty and distress.

Scientific knowledge on the specific disease is likely to be insufficient and often scattered amongst medical experts practicing in different regions or in another member state. As a result of the lack of cohesive action against rare diseases, more can be done at the European Union level to foster cooperation between member states. It is through this cooperation that cross-border knowledge and expertise can be compiled and further research and drug development can be encouraged.

This roundtable meeting will bring 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.

At this roundtable, participants will hear from high-level EU health officials and leading experts, offering a variety of perspectives and recommendations through a series of open discussions.


Subjects to be addressed include:
  • 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
Networking:

The Roundtable will also provide hours of networking time, including coffee breaks, lunch to ensure participants have the maximum possible time to establish and strengthen relationships, whilst exchanging ideas.