As patients & families, one of the most important things that we’ve learned is how important it is to connect with other people in similar situations. This could be with other Pompe patients & families, or just other people with similar struggles.
The internet has made this a much smaller world. It’s now possible to chat with someone on another continent like they were sitting right beside you. For those of us that have a rare disease, this is a very big thing. Many of us lived for years before seeing or chatting with another Pompe patient. There’s no reason now for that to happen. With things like Facebook, Twitter, bogs, etc. we really do live in a different world.
We’ve tried to provide links to some of the social media opportunities that we all have to connect. Please let us know if you would like us to add another. We would be very happy to!