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Having LEMS is being RARE
Global Genes and Rare-X have teamed up to improve data collection on rare diseases. The goal is to help generate research interest and spur drug development. We certainly need all of that in the LEMS community! We are ultra rare. I’ve heard of Global Genes and know a few people who have attended their events or worked for them. I did not know Rare-X, a nonprofit that gathers, structures, and shares patient data with the goal of accelerating research for treatments and cures for rare diseases.
We have a number of younger diagnosed LEMS patients, and these folks are the ones who will benefit from more and better research, leading to more effective treatments, perhaps even a cure. We can hope. But, it sounds like these two organizations have an action plan. And that’s encouraging! I would love to participate and offer my data to them. -
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