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...
DEBRA Europe: A pan-European network for Epidermolysis Bullosa
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...
Australia: Biking to raise funds for research
Over forty people, some of them visually impaired, have recently completed a 700 kilometre bike ride across South-Eastern Australia.
Help for today and hope for tomorrow
The motto of the Jennifer Trust for Spinal Muscular Atrophy in the UK is help for today and hope for tomorrow
The Nikolas Symposium and Research
It all started with two parents discovering that their son suffers from a rare disease.
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...
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