Stressing the Need for Collaboration on Rare Disease Day

Stephen Spaulding, M.A., Director Of Care Services for the ALS Association Greater Philadelphia Chapter, sees the need for rare disease research every day. In this video, he discusses the importance of crossover and collaboration, and how certain science and drugs can apply to more than one patient population.

Spaulding: I think one of the issues that has come up, and this again is very recent, is the need for collaboration. And it shifts the whole focus. In the past, each disease process was in its own silo. Cancer had its area, neurologic disorders had each their own respective silo. What’s happening is, is the research and even the treatments are beginning to overlap. Everything from the medication that we use to the therapies we use to the equipment and interventions are being used in multiple different scenarios and disease processes. So, what’s happening is we are finding that we need to start collaborating with other disciplines and other associations like ourselves that may not be ALS as well as our other ALS chapters across the nation and across the world.

Technology is allowing us to do that in every sphere of the world today. Technology is allowing us to do that on a level that was unprecedented. And it’s a great opportunity to share information that allows us to find solutions. So, somebody in Australia can say I found a new therapeutic intervention that helps an individual in Australia with their ALS. They can share that with us in Philadelphia, USA and we can begin to implement it. Or we can share an innovation or research project that we have. On a higher level, researchers are beginning to do this in the pure science of it and sharing critical information that is allowing us to accelerate the product even faster. That’s not true just for ALS, but it’s certainly from our perspective an exciting thing.

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