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I am looking to talk to one of the moderators. Can somebody contact me? It’s good news for the PSC community 
Screen name: Sparkles
Hi Sparkles,
Mark here. How can I help you today?
Thanks Mark for your quick response.
I have discussed earlier with a moderator about sharing our Foundation (PSC Patients Europe) and it was OK to do so. Soon I will do so.
Now I am not sure if you are aware of the ERNs (European Reference Networks), a project of the European Commission. As Head of the Patient Lead I am very much involved in further developing the ERN-RARE-LIVER. PSC is one of the 12 rare liver diseases covered by our ERN.
SO my question is: may I update this group on the whereabouts of our ERN? THe ERN is a great step forward for patients.
In a lot of countries in Europe, there aren’t any PSC patient organisations or rare liver disease patient organisation. One of the goals is to have a PSC patient org in every European country. My question is if I may share information about the ERN on the forum? This will include asking people who are interested in starting a PSC pat org in their country to email us about their interest.
TO give an example: in Poland there is no rare liver pat org. I received a mail from a med student, a lawyer and a IT guy jover the period of 2months. I connected them and within a day there was a patient group. THis is how we work: connecting people. Once there are a few people who are interested, with our network of the top PSC clinicians researchers in Europe, we can ask them to connect with the national Pat org.
I prefer to officially check with you before posting.
Please advise
Sparkles
Sparkles,
That will be fine. The only thing we ask is that you not solicit donations, try to sell any products or push any off the wall cures that are not based on sound medical science. Please also mention in the post that you got permission from a moderator to post this. It sounds like it will be a potential big help to patients on other countries. Thanks.
Mark Wilson
Thank you Mark! This can indeed have a huge impact on the PSC community, a positive impact indeed.
WE don’t have a product and we never ask for donations, but good that you did mention that.
OK, I will mention I got permission, good idea
Kindest regards
Marleen aka Sparkles
Van: fcmmark [mailto:■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■]
Verzonden: zaterdag 25 februari 2017 13:02
Aan: ■■■■■■■■■■■■■■■■■■■■■■■
Onderwerp: [Primary Sclerosing Cholangitis (PSC) - Online Support Group] [Welcome] Your Mods/Staff
https://sea1.discourse-cdn.com/flex019/user_avatar/www.livingwithpsc.org/fcmmark/45/1177_1.png
http://forum.livingwithpsc.org/users/fcmmark fcmmark Moderator
February 25
Sparkles,
That will be fine. The only thing we ask is that you not solicit donations, try to sell any products or push any off the wall cures that are not based on sound medical science. Please also mention in the post that you got permission from a moderator to post this. It sounds like it will be a potential big help to patients on other countries. Thanks.
Mark Wilson
Dear Mark
If I want to post the new topic, it states:
You are not permitted to view the requested resource.
What am I doin g wrong?
And do post get checked before posting, or should I see my post as soon as I post it (if it would work)?
Van: fcmmark [mailto:■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■]
Verzonden: zaterdag 25 februari 2017 13:02
Aan: ■■■■■■■■■■■■■■■■■■■■■■■
Onderwerp: [Primary Sclerosing Cholangitis (PSC) - Online Support Group] [Welcome] Your Mods/Staff
https://sea1.discourse-cdn.com/flex019/user_avatar/www.livingwithpsc.org/fcmmark/45/1177_1.png
http://forum.livingwithpsc.org/users/fcmmark fcmmark Moderator
February 25
Sparkles,
That will be fine. The only thing we ask is that you not solicit donations, try to sell any products or push any off the wall cures that are not based on sound medical science. Please also mention in the post that you got permission from a moderator to post this. It sounds like it will be a potential big help to patients on other countries. Thanks.
Mark Wilson
Try it now. I had to adjust your trust level as we had converted to a new platform since your last post.
Mark
Thank you for solving that right away
Have good weekend
Marleen
Van: fcmmark [mailto:■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■]
Verzonden: zaterdag 25 februari 2017 17:50
Aan: ■■■■■■■■■■■■■■■■■■■■■■■
Onderwerp: [Primary Sclerosing Cholangitis (PSC) - Online Support Group] [Welcome] Your Mods/Staff
https://sea1.discourse-cdn.com/flex019/user_avatar/www.livingwithpsc.org/fcmmark/45/1177_1.png
http://forum.livingwithpsc.org/users/fcmmark fcmmark Moderator
February 25
Try it now. I had to adjust your trust level as we had converted to a new platform since your last post.
Mark
