PSC Patients Europe is active in various projects, Patient Think Tanks, Patient Panels and task forces and working parties. We try to attend both national and international conferences frequently with both disease-related and disease-transcending topics.
- Lay versions of articles & reports
- The ERN Rare-Liver, the European Reference Network for rare liver diseases
- Lowering the R&D time for new medicine
- Getting the patient perspective incorporated in plans, CPGs (Clinical Practice Guidelines), regulatory affairs etc.
- Patient empowerment
- Making sure the pediatric element is incorporated
- HTA (Health Technology Assessment): a PSCPE Board member an HTAI member and active in the PCIG, Patient & Citizen Interest Party
Below, please find some examples of our projects:
Together with NHG (Dutch College of General Prationers) we have developed & published a brochure for GP´s and other first line carers/health care professionals This brochure, for useage after diagnosis, gives doctors the opportunity to read more about PSC in general, line of treatment, socail aspects etc., enabling them to take better care of PSCers.
GP Brochure International
With the framework of a GP brochure in our hands, we offer the template to other interested parties worldwide, at no extra charge and copyright-free. This will enable e.g. countries where there are only a few PSC patients, to have adequate and reliable information available for PSCers. At teh same time, during the proiject process we also develop amazing contacts to collaborate with further.
Currently the GP Brochure PSC is under construction in various countries, including Slovakia Lithuania, Iceland, Denmark, Sweden and Austria.
The Slovak GP Brochure PSC was the first international version of the GP Brochure PSC and was published in May 2017.
Quality Standard of care for PSC from a Patient’s perspective
During this nationwide bottleneck analysis, we will have an inventory amongst physicians, patients and care givers on challenges and barriers they encounter in the medical field Further anlaysis will lead to an indepth analysis of the various possible barriers, for which we collectively will seek proper solutions. (2-year program in the Netherlands).
PSC researchers in other countries have also shown intrest in this project and would like to see it run in their country too.