How can members of the Global Shapers Paris Hub increase the access to information for patients that have been diagnosed with a rare disease and don't know who to turn to based on a lack of guidance and a lack of resources available to them?

The Hub came up with a few solutions:

1) Organizing topic-specific events such as MTLs, debates between French hubs;

2) Enhancing our communication on health matters, i.e. organizing communication campaigns online (i.e. promoting the World Health Day);

3) Hosting actions in partnership with hospitals (Fatima, one of the project leads, is working with the French Federation of Hospitals);

4) Connecting patients getting out of hospital to enhance experience sharing;

5) Launching a platform to gather resources (rare disease specialists, specialized websites, tips on how to navigate the healthcare system, etc.

This project aims to bridge the information gap between patients and the rare diseases healthcare path: too often, patients have little to no information as to how and where to proceed once they are diagnosed. Our projects aims to channel all the available resources to ease patients' lives as can be done.