The Wegener's-Granulomatosis Forum is probably the largest forum on the internet dealing exclusively with Wegener's Disease, and boasts over 1800 members. The aim of the forum is to allow Wegener's sufferers to connect directly with each other and to be a support mechanism for those affected by GPA. It is run by Andrew, an Australian Wegener's sufferer.
There are 7 major boards on the forum.
The first is a new member introduction board and is naturally where you should start with your first post.
The next place to go is probably the Weggie's story board and give the other members an idea of what you have been through and how the Wegener's Disease affects you.
There is a Medication specific board to talk about methetrexate, Rituximab and all of the other weird and wonderful drugs this disease requires.
The Hospital, Nurse, Doctors and Clinics board gives you a space to talk about the good and the bad treatments you have received.
Tracheal Stenosis is a common problem related to Wegener's Disease and there is a specific board set up for this symptom.
There is also a Face to Face Support Group forum, if you plan to meet some of your fellow sufferers in the flesh.
Finally there is a general WG chit-chat board where you can talk about anything that doesn't fit into the other main boards.
Wegener's is such a rare disease you may feel completely alone and isolated when you are diagnosed, and you may feel like you are the only person fighting the illness. The Wegener's Granulomatosis Forum is a great place to connect with fellow sufferers so that you don't feel alone.
I am already a member there. If you aren't why not join up now and say hello? Tell them I sent you!
Image used with kind permission by Lovelorn Poets.