Rare Diseases Support Community

IgG4-related disease (IgG4-RD) group urgently needed

Hello everyone!

I am a new user. I was informed about this website from a random user on YouTube. How amazing is that? I have just been diagnosed with IgG4 Related Disease. Specifically I am suffering from autoimmune pancreatitis. I was looking for anyone going through the same disease and maybe have a place for a detail discussion on day to day life and huge list of symptoms I am having. Is there any way a new group can be created related to this disease. I did find a Facebook group and I can post this website on or once we have a group. Maybe folks can migrate from Facebook to here? The Facebook group is a closed group. Plus there is very little privacy and people are reluctant to be open on Facebook to strangers. Please consider creating this as I am suffering from it and don’t know what to do. I don’t know how long I’ll have mobility/function of my body as there are multiple things affecting my body apart from what’s mentioned.

Welcome! We can look into creating a group, but I’m not personally in charge of that, so I will bring it to the attention of my higher ups. Yes, our Ben’s Friends sites offer much better protection, and are well moderated.

Sharon from ModSupport

Hi there Sohailali

Hello Sohailali, we are glad you found us! There are hundreds of rare diseases and a great number which are autoimmune. We have a priority list for new diseases, and one of the ways that we pick which diseases go on that list is by request.

So consider it noted! I will have a word with our Medical/Technical affairs ED and see what he says.

Seenie