- 30-04-2018GDPR Changes. Tell Us How You Want to Be Contacted.
- 10-04-2018EGA Board Membership Opportunities
- 10-04-2018Advocacy Training Grant
- 07-02-2018Important Changes to Data Protection.
Rare disese 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 rely upon their participation to ensure research is meaningful. Rare diseasese 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 proactive actors in research:
To find out more please follow the link http://www.rarediseaseday.org