I recently received the summer edition of "The Communicator" newsletter published by the GBS/CIPD Foundation International. It was, as usual, extremely informative. It occurred to me that there may be some members of this forum who may not be aware of this organization. If not, you all should be (IMHO). It is a great organization who's mission is to battle GBS/CIPD through research, education, and organization. If you haven't been to the website, here is the address: http://www.gbs-cidp.org/ Scroll down to the bottom of the page to put yourself on the mailing list for the newsletter. You will be glad you did! This forum is great for exchanging personal advice and experience. That foundation is great for getting a lot of detailed clinical information, from doctors who specialize in this area. You will be amazed at how much information there is that your doctor probably isn't aware of (unless he/she takes a particular interest in this ailment).
hi Lance - it looks like a great site. Could you ask them on our behalf if they would list us as a patient support community on their website? It would help others find us. This site is still growing up but the organization that runs it, Ben's Friends (www.bensfriends.org), operates 35 different support communities for rare diseases. We've filed to be a non profit. Most of the disease specific advocacy groups that cover other conditions we support list us on their sites.
If you have a good contact person there, I'd enjoy speaking with them. thanks!
LanceB,
What do you want to know about the GBS|CIDP Foundation International? Yes, its a site that assists patients and caregivers with information about the disorder and research. The four pillars of the foundation are: Support; Research; Education and Advocacy for patients and caregivers.
Hi GL0016,
This is an old thread, so you may not get a response from Lance. Are you involved with the GBS/CIDP Foundation International? What can you tell us about it?
CG
CanadianGirl, thanks for the reply. Yes, I am involved with this Foundation. Its a great organization that provides information for the patient and caregivers. We have chapter meetings in various locals that provides a face to face with Drs, RNs and specialists that gives presentations of their professions. As I stated in the previous posts the pillars are Support, Research, Education and Advocacy for the patient and caregivers. Check the website out.