I appreciate you taking the effort of adding a support group for PSC. I did the same thing in my country and I am very happy with the results.
If you are looking for existing communities of PSC patients on the web, please check here:
PSC Partners Seeking a Cure
More than 1250 members
More than 1750 members
There are also groups for the UK and Israel.
Chaim Boermeester, Israel
Chaim - this is great. Thanks so much.
Thanks for posting Chaim. Great to have more resources. I emailed you and PSC Partners asking if they could list us on their page that has all the other online support communities for PSC. Here is what I wrote to them. Please put in a good word for us.
Hi PSC Partners - I'm the co-founder of this group and Ben's Friends (www.bensfriends.org). One of your members, Chaim Boermeester, posted a list of other PSC support sites on our site. We're happy to have the list on our site and it led me to you!
Ben's Friends runs 35 different support communities for people with rare diseases. It all started when Ben suffered his own serious rare condition and needed support. Here are a couple background articles on Ben's Friends: www.chron.com/news/health/article/Med-student-starts-website-for-patients-with-rare-4543614.php & blogs.hbr.org/cs/2013/03/deliver_big_impact_on_a_small.html
Can you please list LivingWithPSC.org on your list of support groups (http://www.pscpartners.org/supportgroups) - I noticed we were missing and would love to be on there.