Over the past 20 years, important advances have improved our understanding of diagnosis, treatment and underlying causes of AE. The number of new publications has increased dramatically in the past few years, illustrating the explosive growth in research into this rare disease.
Funding for scientific research typically comes from three main sources: government agencies, such as the US National Institutes of Health (NIH), pharmaceutical companies, and private funders including family foundations, nonprofits and philanthropists. The bulk of the funding comes from pharmaceutical companies. However, nonprofits and their communities, are in a unique position to fill funding gaps and advance therapy.
For instance, the Michael J Fox Foundation has supported 1,902 studies to date in the Parkinson disease field, ranging from basic to clinical research. By supporting innovative pilot studies, investing in proof-of-principal/early failure studies in drug discovery, educating their patient communities, and developing a centralized registry, they have set the stage for smaller nonprofits to follow suit by strategically placing their funds where they are needed the most.
Patients and caregivers have unique perspectives on the benefits and risks of potential new medicines and are able to provide valuable insights on their disease, available treatment options, and their outcomes. Patients and caregivers play an integral part in advancing AE research. Join the Research Network, you will not only invest in research but become an active part of it.
Together, we can change the course of AE.
The Research Network launched in May, 2020 and resulted in the first AEA Community Seed Program 2021. This program supports research focused on the diagnosis, management, and outcomes of individuals with AE, and is funded by members of the AEA Research Network.