About the IPA’s Community Forum
The IPA’s Community Forum is a private forum for individual patients, family members, and patient organizations to come together and discuss Pompe disease related topics. It is the IPA’s intent to provide a secure and easy-to-use site for people to ask questions and share experiences. There are currently numerous ways in which patients communicate using social networking sites and email, but there is not a single, all-inclusive patient-centered forum. With the IPA’s Community Forum we hope to provide one.
In order to ensure the privacy and security of this Forum, to be part of this Community you have to register first, and your registration has to be approved by an administrator. Registrations will be accepted from Pompe patients, their family members and patient association representatives.
We hope you find this Forum helpful. If you have any questions, comments, or suggestions please let us know.
How to Register
- Go to www.worldpompe.org
- Select COMMUNITY in the navigation bar at the top of the page
Fill in all fields below “Don't have an account?” and click REGISTER YOUR ACCOUNT TODAY
You will see a confirmation screen and receive a confirmation email. Please wait for approval by an administrator.
- After your account has been approved you will receive an email.
Now you can log in to your account on www.worldpompe.org, menu item COMMUNITY:
- You can edit and complete your user profile, add an avatar and a profile picture, modify the notification and privacy settings and, of course, start using the forum for communication and collaboration.
- If you experience problems and for questions please contact the webmaster (firstname.lastname@example.org)