As a foundation, our goals start with ensuring that patients are getting accurate educational information and end with our ultimate mission: stop sarcoidosis. Some of our work is highly visible, like our physician registry, patient conferences, and our online support group on Inspire. Other parts of our work are more long-term and less easy to see, like our research efforts. FSR aims to build our research capabilities and resources through strategic partnerships with a wide range of collaborators; some are organizational in nature, some are industry collaborations, and some are academic and medical enterprises.
One of our newer organizational partnerships is with FasterCures, self-described as “an action tank that works to speed and improve the medical research system.” FSR recently became a member of FasterCures’ program called TRAIN: The Research Acceleration and Innovation Network. This program combines dozens of foundations that have a focus similar to ours: to find effective treatments and cures for diseases by pushing research advancements to help patients sooner.
The TRAIN network allows these organizations to share new research approaches and tools, as well as start productive dialogue between industry leaders through webinars and workshops. For relatively smaller organizations like FSR, this network can provide huge advantages, including access to new research tools and techniques being developed by some of the larger TRAIN organizations; some member organizations include the American Heart Association, Autism Speaks and Alzheimer’s Association. These big-name organizations are balanced out—if not outnumbered—by well-established organizations focusing on rare diseases, similar to FSR.
A note from Kristin Schneeman, Director of Programs at FasterCures:
FasterCures believes that philanthropy can be a critical source of “risk capital” in the search for better treatments and cures for disease. We also believe that patient engagement in all aspects of the medical research and development (R&D) process is key to accelerating progress and ensuring we are driving towards outcomes that matter to patients.
We created TRAIN (The Research Acceleration and Innovation Network) as an open-source learning network for patient-driven foundations that fund medical research and development and are interested in taking more strategic approaches to their roles as funders and becoming powerful catalysts in their fields. The objectives of TRAIN are to:
- Encourage more entrepreneurial philanthropy in medical research;
- Build more and better networks between these foundations and other R&D stakeholders such as industry, investors, academia, government policymakers, and payers; and
- Enhance the influence of the network on issues of interest and concern to patient foundations.
We’re so pleased to have welcomed the Foundation for Sarcoidosis Research into the network in 2015. Its role as a connector between all stakeholders – putting patients’ priorities and perspectives at the center – and its focus on investing its resources where there are critical gaps in the field to leverage the greatest amount of change possible, represent what is best about the 85 organizations that make up the TRAIN network.
FSR is not only excited about the growth opportunities that partnerships like this allow, but also about how networks like TRAIN can help accelerate research for sarcoidosis patients and others living with diseases without a known cure. At FSR, we are constantly looking for opportunities to expand our network and maximize our resources for research and advocacy in order to best serve our patients.
FSR is proud of all of its organizational collaborations, which include: