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.
An overview of the key pilars of EU Rare Disease policy.
New EU committee of experts on rare diseases
On May 15th, the EU Committee of Experts on Rare Diseases (EU CERD) was publicly presented for the first time at the European Conference on Rare Diseases – ECRD 2010 Krakow.
European 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
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
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
New EU proposal renews hope
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...
European Action in the Field of Rare Diseases have given momentum to the implementation of National Plans for Rare Diseases.
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.
EUROPLAN - Guidance for National Plans and Conferences
Key documents relating to the EUROPLAN Project, including EU Policy Documents, EUROPLAN Guidance documents and National Conference Guidance documents
EUROPLAN - Details of National Conferences
Stay up to date with the details relating to the EUROPLAN National Conferences via a map and up to date information relating to dates, venues, cities etc.
National Plans for Rare Diseases: France
On 20 November 2004, the French Government announced the creation of a National Plan for Rare Diseases
Bulgaria: The adoption of a National Plan for Rare Diseases
The Bulgarian Association for Promotion of Education and Science (BAPES) submitted to the Bulgarian Ministry of Health the first
Greece on the way to its own National Plan for Rare Diseases
Things are moving for the rare disease community in Greece! At a moment when the European Commission is pushing for all Member States to have their own
A National Plan for rare diseases in Portugal
Two years after the Fourth European Conference on Rare Diseases in Lisbon, the Portuguese are ready to implement their own National Plan
National Plans for Rare Diseases: Ireland moving forward
The EC Communication on Rare Diseases has inspired Member States like Ireland to accelerate the development of their own national plans for rare diseases.
The Council of National Alliances (CNA)
The CNA was established by Eurordis. This structure allows national representatives of rare diseases to work together on common European actions.
Preparing for Poland
Register now for the European Conference on Rare Diseases 2010 Krakow, which will take place from 13th to 15th May 2010
