Patients as proactive actors in researchRare Disease Day 2018 (28 February) focuses on this year’s theme - research. This year’s video pays tribute to the role patients play in research. The patient community needs researchers. They discover diseases and develop treatments and cures. But researchers also need patients and reply upon their participation to ensure research is meaningful.Patients are not only subjects but also proactive actors in research.
There has been great progress in rare disease research, in part thanks to the advocacy work of the rare disease patient community. However, the fact remains that there are over 6000 rare diseases, an estimated 30 million people living with a rare disease in Europe and 300 million worldwide, but no cures and few treatments available for the majority of these diseases. To help change this, patient involvement in research needs to be taken to the next level.
Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.
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