“It motivates me to be more than ‘just a patient’!”
The course is structured to empower me to get involved as a professional patient in the world of drug development!
When I founded an organization for rare diseases 6 years ago I did not expect to be where I am today. We made a lot of progress in R. Macedonia regarding rare diseases and it was a hard work and a lot of learning and cooperation.
Through the EU organizations such as European Gaucher Alliance – EGA and EURORDIS I got a lot of opportunities to network, exchange knowledge, share best practices and learn new skills in patient advocacy.
Today I am a board director at EGA and a member of the Drug Information, Transparency and Access (DITA) Task Force at EURORDIS. As I was getting new responsibilities I decided that I need more knowledge and this was why I become a part of EUPATI.
Patient advocates need all the knowledge and support they can get. We all work in different environments in our countries and we face different challenges and we can all learn from each other on how to do a better job.
Through EUPATI we understand that what we do as patient advocates is very important and we are provided with the tools to do more in the field of drug development which is especially important in rare diseases where we expect more research to be done in future and more medicines to be developed for patients.
Thank you EUPATI for empowering patients to be more influential, knowledgeable, effective and to be stronger as patient advocates.