Being ‘in business’ for only two years, PSC Patients Europe is excited to give you an overview of a few of our achievements:
- Six lay summaries of scientific articles, on Ground breaking PSC research at AMC and about Phase II Nor-urso and the Norwegain PSC Research center. other topics include Risk factors with PSC, scoring system for PSC and PSC in Japan. Translated in 27 languages. Click here for the articles.
- Growing number of National Liaisons
- Excellent relationship with PSC drs. & researchers in Europe and beyond
- Internal Newsletters for National Liaisons
- Partner in two international PSC consortia
- Partner in one prestige international innovative business consortium
- Guest blog @PharmaViews on Importance of Lay Summaries
- Attended various international, disease-transcending conferences, incl. HTAi Oslo 2015
- Grants awarded for various visits / conferences / meetings
- Consumer representative in the Cochrane Hepato-Biliary Group
- ‘Dare to be Rare’ project
- Speaker at Patient-Centric Clinical Trials Conference
- Board member finished Eupati Patient Expert training and is now a Eupati Fellow
- Presentation at Cochrane Hepato-Biliary Group session @ EASL International Liver Congress 2015 in Vienna
National level (NL), most ongoing
Please note: Often, these achievements are the seeds for projects to be rolled-out on an international level
- PSCPE pitch at numberous academic medical centres: full collaboration
- NFU: PSC Centres of Expertise, patient input (NL is only EU country integrating patient’s voice)
- Ministry of Health:
* Compassionate Use & Named Patient Program meetings
- Ministry of Economic Affairs
* Invite Knowledge & Innovation Agenda 2016-2019 meeting: Patient Expert
- Presentation ‘Dare to be Rare’ for 20 Medical Directors of pharma companies in the Netherlands
- Meeting with politician on rare disease research (& funding): suggestions for improvement current regulations and funding system, future & need for disease-specific patient organisations
- Publication: GP brochure on PSC, and roll-out internationally, currently in various countries, including Slovakia (under construction).
- Initiating Project ’Quality Standard of Care PSC from a patients perspective’.
Project with potential roll-out on international level.
- ‘Third Senate Dinner’, topic; Compassionate Use & Early Access, co-initiator
- HTA International meeting, ZonMw (The Netherlands Organisation for Health Research & Development)
- Establishing foundation, with a Board according to the Dutch ‘Good governance of foundations’
- Chamber of Commerce registration & number
- PBO (Dutch: ANBI): tax deductible perks for donations
- Corporate ID, logo
- Website & twitter account (@PSCPatientsEur)
- Trello Cloud for all volunteers: easy & quick dissemination of information
- Eurordis: associated member
- First donations
- Impressive international network
- Quarterly Board meetings
- Two successful grant applications
- Growing number of volunteers from around the globe including Australia, Israel, USA
It has been an incredible two years.
We would like to thank all our dedicated volunteers and supporters who made it all possible!
And the PSCPE Board is happy to inform you there are quite a few very interesting projects in the pipeline, so please keep supporting us and stay tuned!