Roundtable - Nov. 8, 2017

 

 Round Table 2017

Report of the Rare Diseases Europe Roundtable 2017 on the 8th November 2017 in Brussels

Organized by the International Centre for Parliamentary Studies (ICPS)  www.parlicentre.org

 

The ICPS exists to promote effective policymaking and good governance through better interaction between Parliament, Government and other stakeholders in society.

The primary focus is the empowerment of human capital through capacity building.

Facing a lack of cohesive action against rare diseases, more can be done at the European Union level to foster cooperation between member states.

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 through a series of open discussions to support memberstates in diagnosing, treating and caring for EU citizens with rare diseases.

According to the European Commission, rare diseases currently affect 27 to 36 million people in the European Union, and as a result of the relatively 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.

There were 44 participants from 15 European countries.

 

Subjects to be addressed were:

 

1.   Analyzing the current policy framework of rare diseases in the EU and Member States

Viewpoint : European Parliament

Current policy, guidelines and schemes in the EU and Member States

Strengthening European-level cooperation and coordination 

Developing national plans for rare diseases in EU member countries

Supporting rare diseases registries and providing a European platform for rare  diseases registration

 

2.   Improving early prevention, diagnosis and patient treatment

Evaluating current screening population practices

How can we improve recognition and visibility of rare diseases for a targeted patient treatment ?

The new European Reference Networks (ERNs), what can we expect from them ?

How can we implement integrated care provision in coordination between health, social and local support services ?

 

3.    Fostering research, innovation and drugs development

Viewpoint : European Commission, Innovative and Personalised Medicine Unit                 

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 registra

Enabling data analysis within and across many Rare Diseases and facilitating clinical trials and other studies

 

Not every country has a national plan for Rare Diseases, or there is no follow-up for the National Plan.

There is a lot of difference between  the EU countries. Guidelines are being neglected, not always applied or adhered too. There is a lot of research but not always coordinated.

 

The report of this round table meeting will be published in  the Government Gazette of May 2018 as a Rare Disease Report. This report will go to the European commission.

Hermien Remmelink

 

 

 

 

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