PSCPE & our vision

 

PSC Patients Europe (PSCPE) was founded in November 2014, as a
'new style'patient organisation: a pan-European disease-specific foundation, often complementary to the already existing national Patient Organisations (PO's), which are frequently organ-based PO's (e.g. liver foundations, liver patient associations etc.). 

 

 Vision

 

1.  Information, Education and Peer contact

  • Easily accessible information and educational material available in as many European languages to as many Europeans as well as to encourage peer-to-peer contact & support
  • The availability of a lay version of PSC-related scientific articles in as many European languages possible.
  • Creating PSC awareness and a better understanding of the disease and the opportunities & challenges it presents to the patients


2.  Patient Advocacy

  • Patient Advocacy focused on finding the cure for Primary Sclerosing Cholangitis (PSC) and increasing the Quality of Life of PSC patients, e.g. by setting up, maintaining and sharing a pan-European network.
  • To be an inspiring and collaborative partner to alll stakeholders, including policy makers, health professionals, health insurers, academics, researchers, pharma and financiers.
  • Striving for proper medical care for PSC patients andhealthcare standards.
  • The promotion of effective scientific and medical research in all areas of PSC.
  • To establish and maintain contacts with similar organizations on a national and international level.


 3.  Fundraising

  • Fundraising  for e.g. scientific research focused on finding  cure and/ or on improving the Quality of Life of PSC patients. 

 

 PSCPE: To be Part of the Solution