Rare disease research contributes to the development of diagnostic tools, treatments and cures, as well as improved health and social care for patients and their families.
The patient community needs researchers. They discover diseases and develop treatments and cures.
Researchers also need patients and reply upon their participation to ensure research is meaningful. Rare disease research is not done for the sake of creating knowledge; the knowledge generated is only useful if it is translated into real benefits for patients.
Patients are not only subjects but also proactiveactors in research:
