PSC Patients Europe

We are a pan-European patient driven organisation, 100% volunteer-based, and we are working together with various national organisations related to PSC, based in, amongst others, Austria, Belgium, Italy, Finland, Germany, Lithuania, Macedonia, Norway, Portugal, Roumania, Slovakia, Spain, Sweden and the Netherlands.

Our goals include initiating the various PSC stakeholders to work together closely and form a strong liaison. Education, information resource, support, patient advacacy, research and fundraising for people affected by PSC are a few areas we will cover. In all our activities, we try & incorporate the 'peadiatric element', as we are convinced it is necessary for all stakeholders to realise our children can not be overlooked.

We are strong believers that there should be a lay version of every scientific and medical article and report related to PSC available in open source and in as many European languages as possible. We state 'The lay version is the ultimate completion of the scientific article'. So far, the feedback from the doctors and researchers has been great and PSC Patients Europe has been approached by researchers, doctors and the industry to work on the lay versions and to set criteria to do so.

We feel privileged to be able to share our knowledge and experience with others on a national and international level. This also includes sharing patient expertise to .e.g. other patient organisations and on an EU level.

Patient involvement in research
EU Health related-issues
ERN RARE-LIVER
Rare disease topics
HTA
EMA Patient Expert
Salzburg Global seminar

1

0.25

No lobbyists with EP accreditations

We works with (professnioal) volunteers. It's hard to keep track of what they all do and how many hours they invest.

Ms Marleen KAATEE (President)

Ms Marleen KAATEE (President)

III - Non-governmental organisations

Non-governmental organisations, platforms and networks and similar