Bridging Patients And Research

Rare disease patient organisations can be valuable partners in research projects. In addition to being the subjects of the research, patients play an important role by funding research teams, equipment and training or by helping constitute cohorts and by organising campaigns to collect biological samples. This is why it makes sense for patients to work closely with the research community to accelerate the search for treatments for rare diseases.

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

TREAT-NMD: Accelerating treatments for neuromuscular diseases

The TREAT-NMD network of excellence was officially launched on 1 January 2007. It is a European initiative bringing together 21

Bridging Patients and Researchers: The case of DEBRA International

How can patients help advance research into their disease? One answer comes from a young woman suffering from EB (Epidermolysis Bullosa)

European Network for Rare Paediatric Neurological Diseases (nEUroped)

Why are Centres of expertise and European Networks of Reference important? The new project nEUroped will give the answer.

Member profile: Alliance Sanfilippo

'My husband and I had never heard of Sanfilippo syndrome before the doctors told us in July 2005 that our dear and beautiful Ornella was suffering from the disease.'

Eurordis Charter for Clinical Trials in Rare Diseases

The Charter aims at improving the quality of clinical research in rare diseases and at enhancing a transparent and effective dialogue between sponsors and patient organisations.

Patient Empowerment can be fun!

EURORDIS is proposing a new consultation method that will give rare disease patients the opportunity to voice their opinion about issues that affect them.