The Parkinson's Foundation has long been committed to making patient engagement a reality in the Parkinson's community.
For the foundation, patient engagement means engaging people with Parkinson’s disease (PD) as partners — advisors, mentors and co-investigators — in all aspects of our work.
Why? Because patients are the ultimate consumers. When advocates from other disease communities became partners in research, education and advocacy efforts, community needs were met more effectively and treatments were found more quickly. The Parkinson’s community is no different.
The Parkinson’s Foundation commitment to patient engagement can be traced over the past decade:
- In 2001, we established www.PDtrials.org as the first website and community coalition to help people with PD understand and find clinical trials.
- Our People with Parkinson's Advisory Council began in 2006. It is the first-ever PD community council.
- Expanding significantly since 2008, our Parkinson's Advocates in Research program has trained 260 volunteer patient advocates (people with Parkinson’s and caregivers) to serve on the frontlines with health professionals seeking better PD treatments.
- In 2013, we launched our Community Choice Research Awards, a "people's choice award" of Parkinson's research where the PD community has direct input on the research we fund.
- Today, we continue to advocate for patient engagement in the broader Parkinson's community, as well as within the drug development and scientific research sectors. Our team has forged relationships with research professionals to ensure that opportunities exist for our trained patient advocates to share their insights. We also provide regular guidance to research professionals and patient advocates on how they can work together to find the cure.