EU Rare Disease Policy
EURORDIS is at the centre of the regulatory process. Our contribution has been instrumental to adopt important rare disease and orphan drug legislation at the European level, such as the EU Regulation on Orphan Drugs, Paediatric Drugs and Advanced Therapies. By partnering with national alliance for rare diseases in several countries, EURORDIS also influences the national process and pushes for the adoption and implementation of national plans or strategies for rare diseases in every country in Europe.
EC Communication & Council Recommendation on Rare Diseases
EURORDIS welcomes the final adoption by the European Council on June 9th, 2009, of the proposed Council Recommendation on European Action in the field of Rare Diseases.
European action in the field of rare diseases
"Expertise on rare diseases is fragmented across the EU. Even the very existence of some of these diseases is not fully recognised. This is an area where the added value of
Rare Disease National Plans
The Commission Communication and Council Recommendation on European Action in the Field of Rare Diseases have given momentum to the implementation of National Plans for Rare Dis
Our advocacy activities
Today, more than half of new national policies, laws and regulations stem from EU policies, directives and regulations. Since Eurordis represents rare disease patients from all
EUROPLAN: a joint action for National Strategies and Plans for Rare Diseases in all EU Member states
EUROPLAN is a three year project which began in April 2008. Its main goal is to develop recommendations on how to define a strategic plan for rare diseases.
European Centres of Reference
The concept of "Centre of Reference" and the definition of what constitutes a rare disease varies significantly from one Member state to another. The number of centres
Proposal for an EU Directive on Organ Donation and Transplantation: Renewed hope for rare disease patients
Organ donation and transplantation (ODT) is back on the European
Is there a need for medical devices to be further regulated?
The European Commission has called for a Public Consultation on a Recast of all EU Medical Devices Directives. A medical device is an object which is useful for diagnostic
Preimplantation Genetic Diagnosis and patient mobility
Preimplantation Genetic Diagnosis (PGD) - a technique of high interest to rare disease patients - offers an interesting case of patient mobility.
Mobility of RD patients across health services in EU
Patient mobility across European borders is a reality for people living with rare diseases today.
Commission Conference on Rare Disease Research 07
The Commission wanted to raise awareness at the level of Member States and European Parliament on the needs of research on rare diseases...
Patient groups need access to RD research resources
It was a milestone in the empowerment of patient groups on the way to playing a greater role in the European research agenda.
European Workshop on Rare Disease Research
A European Workshop on Rare Disease Research organised by EURORDIS was held March 1st in Brussels.
