You have reached the pages of the Australian Pompeís Association. We are a Support Group for patients who have been diagnosed with Pompeís Disease, their families and friends. Especially for those who have just recently been diagnosed.
As we are patients ourselves, we are very aware of how devastated and isolated one can feel when that diagnosis has been made, and you come to realize that you have a very rare and debilitating disease. We have been there.
We also know that you will have many questions, and of how difficult it can be to find the answers to those questions. We hope to be able to help you with some of those, or point you in the right direction.
These pages will offer you some information, and help you to become more aware of what is happening in the Pompeís world.
You will find links on our pages, which will lead you to other sites that have relevant info.
You will also be able to subscribe to an Internet Mailing List. Itís called GSDNet and itís free!! There you will be able to email with other Pompeís patients world-wide and learn a great deal.