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.