The Pompe community is coming together to launch a new data initiative to accelerate research and insights into Pompe Disease. Pompe Consortium is partnering with RARE-X, a program of Global Genes, to build a Data Collection Program for our families. 🎉
When you participate in the Pompe Disease Data Collection Initiative, you’ll help advance research and the development of new drugs, devices, and other therapies for Pompe Disease.
All data is patient-owned and managed, allowing you to determine how your research-ready information is used, and by whom. We’ll even be able to share data trends with you.
Join us for the data collection platform launch during the Pompe.Community Open Meeting to hear more about the initiative, how the data will be used, and learn how to register to begin sharing information about your experiences. Pompe.Community Open Meeting: Wednesday, June 26th at 3pm PT, 6pm ET!
Register on Zoom: https://lnkd.in/e3YRAfME
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