A patient partner is someone who has experience with healthcare services, usually an expert of their own condition and who collaborates with businesses, healthcare institutions, organizations or researchers, to make sure there is "nothing about us without us."
It's also sharing your experiential knowledge to improve a project or future healthcare workers' education.Learn more »
I invest a lot of time in what I call my continuous education: I attend conferences and webinars, and I read a lot of academic papers to make sure I'm the best possible rare disease advocate I can be, and to always have current and scientifically sound information.
Not all of the projects I take part in are paid. With the volunteer projects, continuous education and my website taking a lot of my time (Ma vie de zèbre—My Zebra Life and development, in fact, cost me money!), I set up a few ways to help me financially.