Rare Disease Policy | www.eurordis.org
Rare Disease Policy
EURORDIS is at the centre of the regulatory process. Our contribution has been key in adopting 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, we also influence the national process and push 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.
EURORDIS Joint Statement on Data Protection Regulation proposals
EURORDIS Joint Statement urges policymakers to ensure that the new EU Data Protection Regulation will enhance health research while protecting personal data.
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...
EC Communication and Council Recommendation on Rare Diseases
EURORDIS welcomes final adoption of recommendations proposed by the council on June 9th, 2009 concerning European action in the rare disease field.
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...
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...
Recent EU proposal renews hope
Organ donation and transplantation (ODT) is back on the European political agenda.
Shaping future policies and practices of NBS in Europe
A workshop for patient advocates on newborn screening for rare diseases was organised at the EURORDIS Membership Meeting.
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...
European Conference on Rare Diseases – ECRD 2010 Krakow
An unprecedented number of 600 participants attended the largest ever European Conference on Rare Diseases
Further need for medical devices to be 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.
2007 Commission conference on rare disease research
The Commission wanted to raise awareness at the level of Member States and European Parliament on the needs of research on rare diseases...
Patients mobility across EU health services
Patient mobility across European borders is a reality for people living with rare diseases today.
Why rare disease research matters
Advocating for increased and more targeted funding for research into rare diseases
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